Last reply 2 months ago
Is limb stiffness a common MS symptom?

Dear members,

I know you cannot give medical advice, but I would just ask if you could be so kind in commenting on my symptoms based on your understanding of MS.

I am a 41 male, and for about 9 months now I have been feeling limb stiffness. It started with my left thumb and with a burning sensation in my left forearm, which lasted for about 2 days and happened just once. Aside from that initial sensation that quickly resolved, all my symptoms were always stiffness mainly.

From the left thumb the stiffness progressively spread to my hands, forearms and feet, and lower legs. I feel no pain, weakness or numbness. I don’t feel pins and needles or cramps either. Just this permanent weird sensation of stiffness, and sometimes very subtle sensations of electric currents and very subtle twitches, both which are barely noticeable. What is very noticeable is the limb stiffness. Some days better than others but stiffness is always present.

I describe it as if my hands, feet, lower legs and forearms were covered by saran wrap, not impairing my skin sensations but impairing the perceived liberty of movement by maybe 10-30%, which enough to make me feel quite stiff and almost semi-paralysed.

I first assumed it was too much stress and been mostly house-bound and bed-bound, with some regular walks on the treadmill for the last 9 months trying to give myself a chance to recover. However, the problem doesn’t show signs of improvement, by the contrary. The stiffness seems to be here to stay and it’s getting more impairing month after month.

I have done a brain MRI, about 5 months ago which was clear, and I am considering doing a spine MRI next. Since clear exams might not rule-out MS, I’ve been avoiding doing them, as I have to pay for them out-of-pocket, and I’m not sure whether MS can manifest like this, but I can’t live like this and think will move ahead with the tests despite the exams sensitivity and specificity uncertainties.

I understand that MS symptom spectrum is very vast and MS can manifest itself in a myriad of ways, so I guess this can clearly be undiagnosed MS at this stage.

Nevertheless, I would like to ask for your opinions, in case someone can relate, Specifically, if you had similar symptoms before your diagnosis and how were you diagnosed and what was your progress like and what treatment path have you followed.

I speculate that considering the progressive nature of my symptoms, that this is PPMS, which tends to affect male more than women, and that is more often associated with MRI lesions in the spine (which I haven’t checked yet) rather than in the brain (where I was clear 5 months ago).

But meanwhile, would just like to ask if anyone can relate or what are the thoughts of the most senior community members, who must have seen this happening before.

Thank you for your support

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joao_gaspar
2 months ago

Well, right after posting I realized what I described as “stiffness” was tagged as “spasticity”. After a google query I got my answer:

“Spasticity is a symptom of multiple sclerosis that causes your muscles to feel stiff, heavy and difficult to move. (…) There are a number of drugs that can help manage spasticity in MS.”

I guess I have my answer and need to proceed with the rest of the exams. Seems to be full blown PPMS.


gijs
2 months ago

Dont assume MS.

Go and see a doctor to coordinate your medical investigations.


mlgilber1
2 months ago

Spasticity is a symptom of many different things. It can be found in people with cerebral palsy, traumatic brain injury, stroke, MS, and spinal cord injury. I would definitely rule out as many other things as well since MS is so difficult to diagnose. PPMS is characterisized by worsening of neurological symptoms, but it doesn’t mean that one symptom worsening is PPMS. I have bad spasticity, nerve pain head to toe, memory issues, insomnia, swallowing problems, slurred speech at times, imbalance, and other symptoms just to name a few and so far not one has gone away longer than a day or two and all have worsened, but they still don’t consider me to have PPMS. They take a look at a few different things in order to diagnose what type of MS. Definitely get the MRI again because it’s good to rule whatever you possibly can. Has your doctor have any idea what it could be? I hope everything goes well and please keep us updated. Also, try not to stress too much, I know easier said than done, but it makes MS symptoms worse and can trigger a relapse if that’s what it is. Has your doctor at least given you any medication for spasticity? I take baclofen which really doesn’t work for me, but it’s a muscle relaxer prescribed to many people with MS for spasticity, but there’s many different medications for spasticity available. I wish you all the best! Good luck!


stumbler
2 months ago

Hi @joao_gaspar and welcome.

As has been said above, these symptoms can present in various conditions, as well as MS. Hence a Neurologist is needed to see the “wood for the trees”.

You might want to consider trying some yoga poses, to stretch the affected muscles. Youtube can provide some examples. Just don’t over-do it.


joao_gaspar
2 months ago

@mlgilber1
Hi Michelle,

Thank you so much for your kind reply.

My doctor attempted to prescribe me an antidepressant but he had no clue where I was coming from.

So this reply will be a mix of reflections about Western Medicine, both about mental health and MS.

I got very sick due to mold toxicity in 2002 when finishing my graduation, and was prescribed Zoloft at the time after being convinced by the doctor that I was depressed. By coincidence I improved and every time I tried to stop it, I would have terrible withdrawal symptoms which my doctor would call relapsing severe depression. He was the only MD in the room so believed him for one decade and stayed on the meds. I was a poster child for the drug during that time.

Suddenly, 1 decade later it pooped-out and sent me into an extremely dark depression, unlike anything I had experienced before. I lost my engineering job and became bedridden and permanently suicidal due to the extreme agony I was living. I felt truly lobotomized and during 4 years tried everything under the sun, tried all psychiatric drugs approved in Europe, US, Canada, Russia and Japan, on and off-label, tried all research chemicals I could find, tried all hallucinogenic drugs being studied for refractive depression cases. Tried alternative treatments like RTMS, hyperbaric oxygen therapy, more than 300 supplements from western and oriental origins, directly or indirectly related with my symptoms. And nothing even scratched the surface of the neurotoxicity I had suffered.

One day, one friend I have met in a support group for drug neurotoxicity support, (which happens to have taken her own life last week due to the extreme suffering she was in: xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx ) sent me a research article about a specific form of elemental magnesium, and lo and behold, after 4 years of 24/7 extreme agony ranking the maximum possible in depression severity rating scales, I had complete remission of suicidality in less than 24hrs.

So, I couldn’t be more skeptical of Western medicine. Something is very very wrong and in theory if I had kept listening to the voices of more than 20 psychiatrists and neurologists around the globe, I would be not typing this to you right now.

So when I was advised to take an antidepressant while I look for a clear diagnosis, I was too shocked to react at the time and told him I needed time to think.

Because if it’s proven by Cochrane collaboration that:

1) Psych-meds in the long term cause the mental illness to become chronic (refer to Robert Whitaker’s “Anatomy of an epidemic” book or cchr. org as start)
2) 70+% of all psych meds have been considered to be carcinogenic in a 2015 New Zealand study entitled “Carcinogenicity of psychotropic drugs: A systematic review of US Food and Drug Administration-required preclinical in vivo studies.”
3) Statins actually kill more people than the lives they save
4) Blood thining medications tend to cause a host of other illnesses. Warfarin was originally sold as Rattex, a rat poisoning drug
5) Frequent pain-killer use cause the pain to become chronic
6) Mammographies cause more breast cancer than the ones they catch in early stages
7) Testosterone replacement therapy in many cases causes way bigger problems than the ones it solves
8) Cipro and Levaquin-like antibiotics flox people all over the world
9) Diabetes is sold as an incurable disease when a UK NIH study has proven the contrary.
10) In 70+ years of cancer research, the improvements have been marginal, with some little exceptions
11) and the list of 21st century “Big-pharma sponsored medicine” goes on …

…If all this and more is happening in name of “help”, I wonder what the catch in the MS drug realm is … Can you still trust anyone in the medical field?

Contrarily to the mental health world, I tend to see optimistic and happy people with MS. People seem to somehow take it with a smile and eager for tomorrow, but I don’t see anything positive about an illness that wreaks havoc body functions at random. Still, I haven’t seen so far unrelenting stories of absolute despair like I saw in psychiatry. Maybe it’s because by nature of the illness people tend to be spared in some functions, and are not given extreme suicidal agony, which seems to be a good thing.

But if the optimism is relative to about 17 MS disease modifying drugs approved so far for RRMS and about 1 for PPMS, which are only in the market since 1993, I wonder what is the long-term outcome of such drugs. MS drugs were introduced after psych drugs, and since 2010 it has been proven that the burden of mental health related disability can be associated with the use of psych meds.

Other friends I have met online and have decided to sign off at the hands of psych meds:

xxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxxxxxxxxxxxxxxxx

MS seems to be a very different landscape, as people don’t seem to be mentioning suicide.

But I wonder if the narrative about long.term outcomes for MS medication is the same. MS seems to be a spectrum and I know I somehow fit in it. Having the diagnosis is just a detail required to insure insurance company profitability and justify medical approaches.

It worries me the most that there is no other approach out there than meds. Have you tried to google anything on MS that doesn’t immediately point to Big-Pharma sponsored MS Information sites? People are talking of MS medication almost as if they were talking about Hep C cure with can be done with a single treatment.

I have reasons to believe that the narrative is way darker behind all those beautifully designed sites with actors. Some of the MS drugs are chemotherapy drugs. Nobody knows if they will increase the risks for cancer down the road.

I am just a newbie and have not searched enough yet but from what I have seen in this video youtube.com/watch?v=JwcZsiGztws it seems that the story at least until a few years ago was quite similar to the genocide happening in psychiatric industry for 3 decades.

I’ve noticed things as the Swank diet, Wahls protocol and Coimbra protocol and wonder if such things are closer to the truth about MS.

Anyway, sorry for the rambling Michelle, if you think what I said made absolutely no sense. But I am in disbelief both about the illness and its metamorphic symptoms full of confounders, crazy expensive diagnosis and treatments, the available options or apparent
lack thereof out there and pharma-sponsored fairy-tale-like stories everywhere, when in fact they are administering people crazily dangerous drugs.

It’s a bit revolting that they need to put a label in people about what kind of MS they have, when in fact the illness has infinite manifestations. Even the lack of lesions is one manifestation. From what I’ve read there are people with negative MRIs and spinal taps, or evoked potential tests, still being treated for MS if people have all the symptoms. According to Doctor John McDougall it really doesn’t really matter what type of MS the person has, other than to justify the use of a specific medication, with very subtle benefits compared to placebo.

Lemtrada is said to reduce attacks by 70% but I wonder at what cost. Is there a chance that the drug records are just in its infancy and in 1 or 2 decades from now we’ll start to see all the long-term effects of taking it chronically, just like it happened with SSRI drugs in psychiatry? I believe there’s a big chance that something similar might be happening, but I am afraid of have even dared to mention this issue. It seems that this community is not MS drug manufacturer sponsored so hopefully this will be not censored.

Yes, my doctor has suggested baclofen too, but I haven’t taken it yet.

I keep remembering my former friend Adam, who took pain medication till the end with minor benefits: youtube.com/watch?v=hsIurYNTduE which makes me suspect it will be just masking the symptoms by poisoning something else in the body or blunting some body function, until it comes back with a vengeance.

I am not really sure of what I am talking about because all this MS world is quite scary and I know the stiffness and buzzing in hands and feet randomly for 9 months can only be MS related and having a diagnostic or not is quite irrelevant. It’s obvious for me that I have any form of it, and a label is not needed.

I am more interested to discuss what happens if we make life-changes that don’t revolve around medication. Like what you mentioned about stress. Things like this should make us think: youtube.com/watch?v=lEnn_AZT-SU

Sorry if nothing of what I said made much sense.

 

**NOTE** : Personal details removed to respect privacy – Admin (stumbler)


mlgilber1
2 months ago

@joao_gaspar No, a lot of what you said makes perfect sense. I know how bad psych meds can be and I was on so many when I was younger and they made things worse. The doctors wouldn’t listen to me either when I’d try to tell them. And withdrawal from them is horrendous. When I was diagnosed in the hospital the doctor there immediately put me on an antidepressant which I didn’t understand why and stopped taking it. I think all meds are dangerous and have nasty side effects, but in certain cases they can be extremely useful as well.

As far as MS I think diet, exercise, relaxation, yoga, vitamins, and more can benefit us more than the DMDs for most people, but you have to find what works best for you. I’m on ocrevus because I haven’t been doing well while not on a DMD, but it may increase cancer risks and other horrible risks. It does frighten me of course that it is so new and we don’t really know what to expect long term, but right now I’m willing to take the risk for the time being because for me personally I think the benefits outweigh the risk for me. I’m also changing my diet and exercise as well and doing natural things in hope of improvements because I’d rather go that route. But I agree with what you have said and I think a lot of people here would as well and we have a lot of people that do manage their MS through things such as diet. MS is so hard since it’s different for everyone as well as what treatment works best for each individual. And I think a lot of us are happy because we just want to live our lives even if we have to face different challenges on a daily basis. But sometimes we do get depressed and that’s really sad and it can be a symptom of MS as well. My MS has actually dulled my emotions which at times I’m thankful for and sometimes it’s frustrating. We all just have to try to stay positive and happy as best as we can and this site is so great because everyone is super friendly and supportive.

For the spasticity I find that physical therapy and stretches work best. It may be hard at times to want to do stretches or exercise since it feels like your body is so tight and you don’t want to get out of bed, but moving around is the best thing you can do for it and I have to remind myself of this everyday. I hope you find what works for you!


mlgilber1
2 months ago

@joao_gaspar I’m also so very sorry about your friend! My prayers go out to the friends and family!


joao_gaspar
2 months ago

@stumbler

Hi stumbler,

Yes, I guess the next step is a spine MRI and eventually a spinal tap to try to get more clues. I will look into yoga poses too.

Thank you very much for your message and suggestions.


peterfrancis
2 months ago

@jao_gaspar

I got my diagnosis of SPMS after an initial Doctors appointment, followed by an appointment with a Neuro then an MRI Scan followed by a Lumbar Puncture or Spinal Tap.

A fairly lengthy process but, at least it showed they were checking everything.


joao_gaspar
2 months ago

@mlgilber1

Hi Michelle,

Thank you for your kind words and experienced advice. It helps me understand the MS world a little better.

It looks like it’s no different than in psychiatry and people are promptly suggested expensive drugs with fancy marketing campaigns, but this time the MS drugs seem to produce more measurable effects if they can prevent attacks so some extent so I guess I got the point. The informed consent thing seems to be a big issue here.

For my own sanity I will just place these references here, which you might know already, and were the first I came across when looking for other perspectives of the problem:

Ref 1: https://www.drmcdougall.com/misc/2009nl/jan/ms.htm
“His research soon showed that with adherence to the diet relapses decreased by about 70 percent in the first year of treatment (from 1 relapse per year to 0.2 per year). Then after the first year there were continued improvements (about 5% fewer relapses per year for the next 2 years). For the first 16 years of treatment with a low-fat diet the rate of exacerbation (new attacks and/or decline) was decreased by 95%. (Compare this to the dismal results of drug therapy, mentioned above, where half of patients are in serious trouble within 10 years.)

For outstanding results, patients have to follow the Swank Diet strictly because even small amounts of fat make a huge difference. In the study he published in the medical journal, the Lancet, in 1990, Dr. Swank found that a difference of eight grams of saturated fat intake daily resulted in a threefold increased chance of dying from multiple sclerosis.

Ref 2: “Effect of low saturated fat diet in early and late cases of multiple sclerosis.”
https://sci-hub.tw/10.1016/0140-6736(90)91533-g

Ref 3: https://www.youtube.com/watch?v=soKM6z1cdiM
Coimbra Protocol with 1000 IU/Kg, removing all dairy products and calcium enriched foods, and ingesting a minimum of 2.5L liquids a day. Close control of Vit D levels, PTH and Serum Calcium levels.

Ref 4: https://www.youtube.com/watch?v=2vdJbowhTxY
Coimbra Protocol (same as above) It’s in Portuguese but the essential to retain is:

Protocol provides 100% resolution of for lesions with less 1 year old and stagnation of lesions older than 1 year old, with onset of no new lesions. This happens in 95% of patients.

The remaining 5% of patients still has MS activity although it’s reduced by the treatment.
The factors associated with the limited effect of the treatment in this 5% of patients is:

1) Emotional problems. Patients having high levels irritability, depression or fear of the illness.
2) Use of excessively hot baths
3) Smoking habits
4) Alcohol consumption
5) Urinary infections

Dr. Cicero Coimbra emphasizes the importance of the emotional factor to improve the odds of total response of the therapy.

Ref 5: https://www.youtube.com/watch?v=kZ5NGLM1k90
Plant Based Diet

Ref 6: https://www.youtube.com/watch?v=b7-b13aThpU
Reversing Multiple Sclerosis Using Functional Medicine

Things that might deserve some attention I guess.

Thank you so much for being there


mlgilber1
2 months ago

@joao_gaspar Thanks for all the information. Message me anytime.


hmcampos
2 months ago

Olá João.

You are well informed it seems. It also seems to me that Doctor Google is your sidekick. which can/is a very non reliable “friend” specially when you are looking for answers towards something you are not sure you have.

If you wish to talk via message let me know, we do speak the same language after all but do take care and be quite careful when looking online.

Cheers e um abraco.
H


highlander
2 months ago

@hmcampos
👏👏👏👏👏👏👍👍


joao_gaspar
2 months ago

@hmcampos

Olá HM and thank you for your comments. Yes,.I would love connecting with you but please don’t feel obligated to, I will probably not be a very good company in my complex life and health state.

I am not sure how to comment on your Dr. Google et al. remark, because it’s a very broad generalization. The biggest mistake I have ever made was to trust real life MD “professionals “blindly, without doing my own layman’s research first.

I have watched probably all the “My MD story” testimonials available on YouTube, and the vast majority of the stories did not coincide with my case, with some very notable exceptions.

I have been looking for explanations for my symptoms for more than 9 months. I used to program for a living and since this happened I became bedridden unable to do anything. The impact this had in my life was more than severe. My productivity decreased by at least 95%.

I spent a little fortune so far in blood work trying to find markers of auto-imune illnesses or other infections and all tests came back normal.

I have spent a considerable amount of time going through lists of conditions that could mimic MS, from common neuropathies, to simple electrolyte imbalances, mineral deficiencies (and supplementing with them just in case), to terminal conditions like ALS.

Considering I have been having stiffness and muscle twitches I could have assumed that they were fasciculations and consider this was ALS. But I believe it’s unlikely taking in consideration the lack of muscle wasting and the incidence statistics.

Same for many other conditions I’ve analyzed, from fibromialgia to sarcoidiosis or Lyme disease.

Somehow, by differential exclusion, the MS diagnosis just makes sense in my case. Not that I want it or want to suffer it in advance. I am terrified about all this, and of course I would prefer to keep the faith that it’s something else.

But it would be extremely weird that I have the same symptoms that led some people to be diagnosed, and am debilitated by them for so long, and it’s just some psychosomatic condition. I am not a special person. If I have flu symptoms I am highly likely to be diagnosed a flu like anyone else would.

The way I feel my lower limbs as if they were covered by a dry rosin layer, and the way the sensations morph spatially and temporally accompanied by muscle twitches and slight buzz electric sensations deep inside my hands and feet, and the slow but constant and progressive way in which these symptoms evolved and spread through my hands and feet over the last 9 months, are consistent with neurological symptoms related with MS, not with vascular or muscle, systemic of virus conditions.

And considering I have ruled out stroke and brain tumor 5 months ago with a Brain MRI, and considering my symptoms have been progressive and increasingly more debilitating, the only plausible explanation is any level of underlying demyelination going on.

My goal with this post was to have someone’s insight in case anyone had had contact with description of conditions that could mimic these symptoms, because when reading medical references that list MS mimicking conditions I can’t possible fit my symptoms on them, but unfortunately they fit quite well on the broad spectrum of MS manifestations.

And damn how I hate that my intuition is highly likely to be right. But it looks like a rat and walks like a rat…

Dr. Google was not meant to be a friend. It’s just another opinion.

My drama is no longer if I have it or not. I feel from all literature and testimonials I’ve seen that I should have not waited 9 months quite impaired for it to go away. I have been in denial most of this time.

Considering I have been living extreme and exponentially increasing levels of toxic stress over the last 10 years, with particular incidence over the last 5, suicidal almost permanently secluded mostly living indoors, sedentary, and sleep deprived, living toxic stress and surrounded with toxic people and bullied by doctors and signatized by family and friends, adding up to my room of traumas, it makes all biological and physiological sense that my body immune system has decided to attack itself, regardless that my relatively good exposure to sunlight until the critical age of 15yo gave me some protection in terms of DNA expression to auto-imune conditions. The toxic stress and traumatic insults I have subjected my body to over the last years had the power to clearly rewrite the expression of some genes, ultimately leading to an auto-imune condition like MS.

I have other life and health stressors that individually would make me want to end my life, so MS appears to me as the inevitable diagnosis and a simple formality at this point.

I am not even sure if I want to find it quickly considering the impact it will have in my life. I am currently unemployed, and should probably consider securing a job first and an health insurance , but considering so many limitations around such possibilities, requiring me relocating to other country, I am sure that any option I chose will be a bad option.

Medication included. If I decide to get the diagnosis through private doctors so it does not show in my national health records, and accept the western medication , I am sure I will be one of the few unlucky guys that will develop cancer in a no time, considering the toxic levels of stress I have been exposed over the last decade or more.

MS drugs are not an option for me. I will need to perish at the hands of the illness akin to a very crude and raw fist fight between a wounded David and Goliath.

Good Lord,
Why had the world to be so complex


joao_gaspar
2 months ago

I wonder what are your thoughts about the Wheldon hypothesis:

http://www.davidwheldon.co.uk/ms-treatment.html

In 2016 while fighting extremely severe and refractory and treatment resistant suicidal depression, I ordered an oxygen concentrator online at eBay to perform EWOT (Exercise with Oxygen Therapy). It was a used German machine sold refurbished by the manufacturer at half the original price.

After just 24hrs of first using it, I developed a very severe pneumonia, like I had never seen before, completely soaking 1 pajama in less than 1 hour with perspiration. It happened during a night so after 6 hours I had to switch to robes and then to sheets and blankets. My lungs made a whistle sound at the same time and my temperature exceeded 40 degrees Celsius. I never had such a violent fever all my life. I went to the ER and was diagnosed “bronchitis” on a X-ray but I am sure it was something way more violent. My parents told me they never saw anything like that too. I was treated with Levaquim which took almost 1 month to give me some 60-70% improvement from baseline. But a lingering infection persisted and I went to the hospital 2 more times in the following months with breathing difficulties that were not as severe but warranted an antibiotic course. I was given amoxicillin for both times and I eventually got around 80-90% recovered.

However since then, and that was 2.5 years ago, I never recovered my breathing capacity fully, as if I acquired some sort of chronic, although very mild breathing difficulty.

I was always convinced that such 2nd hand oxygen concentrator must have been used in some hospital environment where bacteria or viruses could exist, and despite being refurbished by the seller, probably carried such pathogens all the way from Germany to Portugal , ultimately infecting me and nearly killing me from respiratory infection.

All the nozzles and air tubes were brand new and the insides of the machine were absolutely new with new filters, compressors and filter cells, but I still think it was a huge coincidence and after seeing this “Chlamydophila pneumoniae” bacteria hypothesis, I wonder if this was the environmental factor that started the MS ball rolling for me, only to manifest itself around 20 months later.

I wonder what more informed thoughts than mine about this might sound like.

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