Last reply 3 years ago
Need help please with symptoms

Hi guys
As you may know I’m not diagnosed yet but the symptoms keep coming and I’m terrified now, I know no two Ms cases are the same but I need your opinions on this and whether it’s a relapsr progressive or even worse kinds of Ms
Dec – Lhermittes
Jan – hand tingling
Feb – feet tingling and burning, odd arm ache
March – leg pains all over both legs
April – legs stuff struggle to walk far, pain tops of legs up to buttocks and private parts

And now today feeling the need to pee constantly even after going!

All the tingling is predominantly left sided but with ride sided too, both legs are achey and sharp pains in them

Is this even possible? Is it a number of relapses? One big lesion? Or something else? It’s terrifying me!

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stumbler
3 years ago

@krisp , unfortunately, bladder problems are quite common with MS. It could be urge/frequency incontinence or it could be retention or a mixture of both.

Is it a relapse or not? That’s a difficult question, but you’re doing yourself no favours by continually worrying and focusing on potential MS. This could become a self-fulfilling prophecy.

A phrase often used be MSers is “I have MS, but MS doesn’t have me!”

Consult the professionals and let them consider the evidence.

Try and live your life, rather than dwelling on these possibilities. 😉


krisp
3 years ago

Hi stumbler I know exactly what your saying, ive done so much research though on Ms curves relapse rates etc and how this is going is not a good prognoais at all, nothing seems to be going and I seem to be getting more and more symptoms every month!

I want to live life but I wonder what life it will be and how long for? I know it’s a bit moody for this but I’m really struggling tonight


hollylb10
3 years ago

Remember that MS is NOT a death sentence…..Life expentancy is normal, or as close to normal as can be for most people with MS! Remember I told you about my Great Aunt who lived into her late 80s with MS and passed away due to NON MS related circumstances. In fact the biggest killer of all for people with MS is the same as the rest of the population, cancer and heart disease! x


Anonymous
3 years ago

@krisp The thing missing from all of this is: Have you shared all of this info with your doctors? Have you been seen by a neurologist? What have they been able to rule out? What are they waiting for to decide what you have and how to treat you? Regardless of the eventual DX it cannot be prudent to do nothing while you suffer these episodes. Make sure you understand what they are telling you and what the plan is. If they don’t know, find a neurologist with good credentials. The MS society can help. You are describing episodes of neurological inflammation that could be caused by any number of things. You should be tested to rule those conditions out. It does not sound like you are under a knowledgeable doctor’s care. It happens. I had a GP that had no idea what to do with me and refused to admit it. I was rudderless for more than a year while the damage accumulated and it scares the hell out of you. In the US it is estimated that a GP sees a case of MS maybe once in their entire career. My EX GP is still waiting to see his first case! I found a neurologist on my own and he DX’d me during the first visit and prescribed steroids until I could start Tysabri. I got my life back after a while. Go get your’s back. Try to find a good neurologist tomorrow!


Anonymous
3 years ago

@krisp, You said you were struggling emotionally. You must remember that depression is a common symptom for patients with MS like conditions and as such you are not currently the best candidate to make important decisions. Have someone that you trust help you get the medical care you need if you feel confused about your situation. It is normal for the symptoms you describe to impact your judgment. I had all of those symptoms, many times all at the same time. The bladder symptoms are awful alone and unfortunately among the most common. I have seen estimates of up to 80% of patients have bladder problems. Once DX’d, make sure your neurologist knows about the bladder problems because there are many drugs available to help out. Just getting this outbreak under control with steroids may remedy this symptom for you. The key to all of your worries and problems is to get properly DX’d and treated. @stumbler was right about worry. It is your enemy beyond spurring you on to action. No well regarded neurologist is going to stand by and let you suffer with these neurological symptoms without aggressively pursuing their cause and treating the symptoms causing your distress. Remember, the British say Keep Calm and Carry On! 🙂 (i.e. You’re not going to die!)


krisp
3 years ago

Hi thanks all
I appreciate the ideas
My neuro is pretty good and always accessible, I’m going to see him tonight to see what he thinks, my worry is that there’s no real pattern to all this, I’ve had the continual feet burning and hand tingling on and off throughout the day, but every month it’s like I get a new symptom, the fact it all is spinal issues from what I can see doesn’t help either.

The motor leg symptoms are what worry me the most as from what I read this is usually a later or more progressive symptom is that true?

Apologies for all the questions etc I am needing help as this new set of issues have had me feeling very down about the future with this


Anonymous
3 years ago

@krisp, I tried very thoughtful suggestions. It is hopeless if you cannot understand that your “neurologist” is failing you. It is strange that someone new to MS prefers their own judgment over their doctor’s and then seeks out and rejects advice from MS bloggers that have forgotten more about MS than he/she knows. HELLO! MS is a disease of the CENTRAL nervous system! It can create havoc all over! Stop trying to DX yourself. An MS specialist should have no problem eliminating the several other possibilities that mimic MS while simultaneously treating the symptoms that are troubling you so much. Some people need love. Others need tough love! You don’t need advice other than find an MS specialist or equivalent immunologist! Very best wishes!


krisp
3 years ago

I apologise if my reply seemed dismissive at all I was asking auestions to try to get a better understanding, I get you have a better knowledge than me and I have taken your advice on board
I also get it is annoying for you to see someone come on and ask questions, however this is coming from someone who has never struggle and is now currently in the bigges physical and psychological struggle of their life, the last thing I want is to upset anybody but I also suggest you should feel the same,


Anonymous
3 years ago

@krisp, You are only bothering me because I was where you are now 10 years ago. I get it that you are scared. You need to get rid of Dr. “Google” in favor of a reputable specialist. Not the “neurologist” that seems to always be available. Neurologist appointments can take months to get here in the US. A reputable specialist can take several months. Have you been anywhere that has ordered a brain and cervical spine MRI with and without contrast? If you did, then the doctor that ordered it would know what to tell you. I was very afraid of doctors and started my MS experience off with a really bad doctor because he was always available and didn’t seem threatening to me. He did not have a clue. He cost me a year of further suffering and lost function. That’s right, lost function. You don’t have to keep suffering and risk lost function because you have an affinity for your doctor. I am the friend that I didn’t have to do you the favor of not trying to perform an internet DX. Find a specialist today and get help!


krisp
3 years ago

Hi
I get what your saying and I do appreciate it thankyou
I’ve had an mri of brain and c spine in Jan both xlear, but since then it’s the symptoms that have come on at a fast rate, I do know what your saying and I have already changed my gp and I’m going to see my neuro tonight to see what he thhinks regarding next steps and repeat mri.

Again I know where your coming from and understand it’s hard, I’ve got thick skin and can take tough love etc but there are others who can’t and it can’t be harder for them when people are that way


Anonymous
3 years ago

@krisp, That’s OK! You are the only one that I felt that way about. So, I have offended no one else I hope! I needed to get you better focused on getting timely help. Now you have revealed useful information instead of speculating about your symptoms. It is very possible that an appropriate MRI was not used or was not read properly. My GP ordered my first MRI in an Open MRI which revealed nothing. I finally went out of state to a recommended specialist. I had 14 vials of blood taken at once to rule out the impostors and had evoked potentials testing as well as a myriad of physical and sensory tests. They tossed my MRIs and ordered new proper MRIs that confirmed my RRMS DX. I am an engineer. I only deal with facts. You should not try to DX a complicated disease based on your symptoms. Put that energy to work finding a neurologist that not only will get to the bottom of your case, but treat you now for all of the symptoms you are struggling with. Good luck!

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