Last reply 3 years ago
I feel like I have no options

Hi,

I’m new here and have been looking for a support group for a long time. I have MS, have been diagnose for a little over 4 years. My diagnostic was done in the weirdest way possible, and to make a very long story short, it was not done in the most professional matter at all. Since I’ve had to switch Neurologist because I had absolutely no support from the 1st one and the only thing he was doing was pushing me to take pain pills and tell me I probably had other diseases like fibromialgia and other unexplained diseases, it was why I felt that way and told me to stop complaining because my MRI’s where not showing a lot of lesion, but I still have secondary progressive MS?!?!?

So I took my pain, my fatigue, my pain meds and Tysabri and found a new Neuro with the help of my family doctor and starting new. Good thing I had my family doctor, because if he had not been there, wow!!! Not sure what would of happened. Now me and the family doc manage to get the lower back and left leg kind of back to normal and the pain was very manageable, but since Dec. 28/29, it’s like all my pain meds have stop working and all the pain in my lower back have come back and the pain as switch to my right side and the pain is excruciating. I can’t even sleep it hurts so much. My right side as never been affected before. Every time I relapsed, it was always on the left side, hand, arm and leg, but never right. Now, the new Neuro wants me to up my intake of Lyrica (1 more pill at night for 1 week and then 1 more pill in the am for another week) and then I’ll see her… I’m just so annoyed, annoyed that they/we can never be sure what it is, is it MS? Is it something else? Why always a doubt? It’s like you go to a walk-in clinic because you have a really bad cold and they listen and are all nice, but when you tell them you have MS it’s like you just told them you have the worse contagious disease in the world.

I’m usually a very positive person and I never write stuff like this, but today kind of drew the line. I don’t like to take more pain killers to see if it’s MS or not. I feel like dealing with MS everyday is hard enough that a we should get a better support system out of our doctors and nurses and if it’s not MS, what is it? Will me taking more pain meds make it worse? Or if I wait, will I make my maybe non related to MS issue worse?

Anyone feels like sometimes we are so out of options it’s not even funny??

Thank you for letting me vent 😉
Carly

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juls
3 years ago

Hi Carly
I have MS and been diagnosed for 20 years, I had the run around to start off with, mainly because the GP I was seeing at the time wasn’t really doing anything and couldn’t seem to decide if I needed to see a specialist and what kind. My symptoms presented as widespread numbness on both sides from the feet right up to my breasts and back. I eventually went to see another GP who acting quite swiftly by phoning a neurologist and made an appointment for me that week, within the following week I was diagnosed with probable MS.

Some of the tests were preformed in surgery. Then when it became clear to the neuro that this was not a peripheral nerve problem, he admitted me to the local hospital to have MRI. Which he said, was very conclusive because not all lesions show up even if they are there. Mine showed up in both side of the cerebrum or cerebellum, I can’t remember which , and one in spine.The neurologist explained that it is not exact because there is still so much that they don’t know about the brain. It can mimic other illnesses. Along with symptoms,MRI and a lumber puncture with I decided to have only because it the supports the diagnosis by showing up, if it is there, a protein in the cerebrospinal fluid. I could safely say yes I do have MS because everything else has been ruled out. And it has proven true since

Apart from immunosuppressants I have had short courses of steroids, periodically, probably all up no more than 10 in 20 years since diagnoses in 1995. For pain I used to take anti inflammatories such as celebrex and mobic, but now I only use paracetamol “osteoeze”. A paracetamol that is recommended for long term use and is effective if recommended dose is taken – 6 a day. T

I have found MS to be a journey no different from everybodies I know. In November I attended a medical cannabis 2 day symposium in Tamworth NSW Australia it was brilliant, speakers from all round the world were there, I had never thought MC to be an option. I found out some much there. Some much of what I never knew. Since them I have started to use it in tincture form and found that to be the most successful of all products tried over the years.It is also helping with spascity.

As I earlier pointed out that everybody has a journey, with a need to find their own way. I can only talk of my own personal experience. I found out some valuable information at the symposium from educated people from US, Israel, Czechoslovakia. The symposium was organised by parents of a young man with colorectal cancer at end stage. He was using marijuana for pain. His parents were getting it for him, one a nurse and one a high ranking police officer. They, along with other parents of children with a severe form of epilepsy, were pushing for legislation. It has finally been legalised in NSW for terminal and chronic illnesses. If you want further information go to You Tube and search cannabinoid system. There was much the same information as I saw at the symposium.(unfortunately I cannot find the form I took home from Tamworth with the names of all the speakers hopefully I will find it).

Kind Regards
Julie


stumbler
3 years ago

Hi @carly , there are a lot of stories about the trials and tribulations of getting a diagnosis of MS. It is a difficult condition to diagnose but we would all like to be treated professionally and compassionately.

I’m not surprised that you have had a flare up at this time of year. Christmas puts so much pressure on you ladies, who have to make it all happen. So, it could well be the extra pressure and stress that this time of year causes.

Having said that, I share your concern with the “pop more pills” response that you received. Yes, we need to be able to manage our pain so that we can get quality sleep and have some quality of life. But we also need to know that the cause of the pain is known – is it neuropathic and directly down to the MS or is it a bad habit that we have adopted because of a weakness caused by the MS or even nothing related to our MS?

Taking an extra dose of Lyrica isn’t a major issue. The safe dosage of Lyrica can go pretty high. I’ve known of one person who was on 2700 mg for a time!

But, it may be advisable to seek the view of a Neuro-physio, who can assess which muscles are weak and whether you have adopted bad practice in posture/gait. Exercises can be suggested to address any issues.

@carly , I believe that you may be a Canadian resident, so you may wish to join the group, “Canadian MSers” (https://shift.ms/groups/canadian-msers/), who may be aware of some of the local issues that you may encounter.

Otherwise, welcome to our piece of cyber-space. Just putting all those words down can be quite a cathartic exercise. 😉


carly
3 years ago

Thank you 🙂

The reason why I’m so wind up about all of this is that I actually take other pain medication, and some of them are Nabilone, which are Marijuana pills. (@ Julie/Juls)

I understand they us to feel better and feel no pain, but I would just like to make sure that I’m treated for the right thing. Now, MRI and LB confirmed I have MS, so I can deal with that. I also know that there’s no way to know for sure if it is a flare or not and the symptoms are so different from one time to another that’s what drives me nuts.

I also could write a book about how I was treated in the last 4 years, so I have a lot of frustration and being able to write that venting session last night felt good.

I’ll check out that Canadian group,
Thanks again!!


stumbler
3 years ago

@carly , here’s a good website that defines a relapse for you:-

http://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms
😉


casper
3 years ago

Hi @carly, how are you doing now?

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