Last reply 1 year ago
Any advice please

Hi ive been suffering with numbness pins and needles in both legs and arms, blender incontinence, fatigue, balance problems and weekness, double vision and some other things this has happened gradually over a period of 4 years and was referred to a neurologist who is useless he told me initially it was down to stress and i couldnt accept that as im not stressed and havent really ever been too stressed. I had an mri without contrast of the brain and spine but that was normal so he then changed my diagnosis to functional neurological disorder as on examination i have weekness in my limbs.. I told him is it possible i have ms he laughed and said no but I have periods where i have a few good days where i can function a bit and then other days i cannot move.. Im just so frustrated as its been over 4 years since my symptoms started and i feel myself deteriorating and i just want some proper answers.. Has anyone else been diagnosed with functional neurological disorder only to find out later that it was in fact ms..

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stumbler
1 year ago

Hi @koudez and welcome.

I can understand why you’ve joined us. The symptoms you’ve had over the last four years could be MS. But, they also could be caused by various other conditions too.

A clear MRI is not conclusive either way.

A diagnosis of MS is never given lightly and has to follow the Mcdonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) . Although, the dismissal of this suggestion seems somewhat unprofessional.

How has this been left with the Neurologist, has he discharged you, or do you have a further review date?

For the time being, maintain a symptom diary, where you can record anything “strange” that you experience. This will allow you to create a short, concise summary to present to the Neuro at your next meeting.

Otherwise, you do need to try and avoid stress, which can make the body have “neurological” symptoms.


koudez
1 year ago

Hi thanks for your reply i did have a diary but he didnt seem that bothered, also im never stressed im at a happy place in my life despite being ill i dont think enough was done all i had was the mri and thats it he said i have functional neurological disorder and discharged me with no follow up. My nan and aunt both have ms and they believe i have this also, it took them 8 years to get a diagnosis and again they were initially diagnosed with stress.. Its like they put everything down to stress. My cousin had a brain stem stroke last year and is lucky to be alive he went to the hospital the day before complaining of severe headache and numbness in his face and blue lips he got dismissed and told he had high blood pressure and was suffering with stress.
Im thinking to go private as im not happy

You clearly have an issue ms or not. Stress may add to it but I doubt it’s the cause. I would go get a proper dr to look at you and see what they recommend. That initial diagnosis is worth spending money on if you can afford it. After that you can fall back to other options.

Do you know if they used a 3t or 1.5t MRI?


stumbler
1 year ago

@koudez , discuss this situation with your GP. You’re entitled to ask for a second opinion, so see if you can be referred to an MS Specialist.


koudez
1 year ago

Im not sure what mri was used, would this make a difference? Ill have to see if my gp can get a copy of the report/mri. Yes i think i will go back and ask my gp for another referral to an ms specialist. I was actually looking them up last night and there are quite a few in hospitals near to where i live, however i know the waiting time is going to be quite lengthy so I will consult someone privately and hope that they will have some answers for me.. Thank you both for your reply


mmhhpp
1 year ago

I agree get a second opinion. My symptoms are exactly the same as yours , started rrms 2010 then for the last 4 years going rapidly down hill! I wonder if it is now spms! Some weeks are awful. Walking with rollator at home with much difficulty Scooter outside house! Climbing steps in house with help, my feet need to be lifted up! Feeling really scared for the next couple of years. Xxxx


dashernot
1 year ago

Do see your gp and ask for a referral for a second opinion. If they don’t want to do it inquire about going private for a consultation with a Neurologist. I did and got a good one who put me back on the NHS for the test , so hopefully you would only have to pay for the consultation.


koudez
1 year ago

Thanks for your comments ive got appointment to see my gp next week so will ask him to.refer me to a neurolgist who specialises in ms as i have a list of consultants if thats not possible i will go for a private consultation as i cant continue like this, my husband is unable to work now as things have got so bad and thats not fair on him


ashia2013
1 year ago

Hey I’m so sorry that your Neurologist is a bit of an arse. Trust me I have experienced it. Last one I saw told me with a confirmed diagnosis of MS for six years that there wasn’t much more he could do for me until I lose the use of my legs entirely! Talk about bedside manner However even if you had an MRI and the doctor said that it definitely showed lesions (as mine did) they can’t confirm an MS diagnosis without performing a lumber puncture. They look for oligoclonal bands in the spinal fluid. These are secreted during the process of demyelination that occurrs in MS. They didn’t tell me I had MS just on the basis of just my MRI, the fact that my big sister has MS, my twin Lupus and Addison’s disease; clearly showing a strong history of autoimmune disease. There are many illness that mimic the symptoms of MS so they have to be 100% sure before they give you the diagnosis. It is an earth shattering day being told you have MS. I get that in some instances having an answer is better than no answer but you want them to be 1000% sure before they give you the diagnosis. Imagine if they gave you the wrong one! They’d be in for a law suit! This actually happened to my twin sister… she was told she had thorid cancer instead of Lupus and she was deeply traumatised. If you need definitive confirmation a lumber puncture is definitely a step in the right direction. No one wants you to end up being diagnosed incorrectly. Hope they help you find an answer x


sonja1966
1 year ago

I am new to the group so I just wanted to say something. My son had symptoms if MS prior to the age of 9, took him to a specialist using the military doctors. They didn’t find any lesions on his brain and when he was telling them about his symptoms they thought it was weird. We had two dr’s and they looked at one another and then asked me to leave the room. They asked him if he was being abused and he said no. They asked more questions so I saw how this appt was being played out. When the test results came back I received a call saying that the test came back negative for MS. They only did the mri not a LP, at this time he was about 16. They told me that he was depressed and the depression will make him sick when he is not. Isent him to anotherilitary dr and they looked at prior notes and said that he was depressed again. I took him to see a psychiatrist not because I felt he was depressed but to have him be seen to quiet these dr’s down. The psych dr said he was not depressed and he was where he needed to be because of the pain from whatever he was going through. Told the dr’s of the finding and I was told to get a second opinion. So I made an appt to get another opinion but this time a civilian dr. Based on the test that was performed he made a confirmation of MS. Lesions don’t show up in the brain until age 20 so should never be used as the primary test for a confirmation. When you are young. With a LP if the diaease is not active you will not get a positive diagnose through the csf. Depending on the individual ms symptoms are very strange, I told the dr’s that my son had MS because I was with him 24hrs a day and I knew what he was going through. So if you feel something is wrong then it is. For 12 years I was told I had Lupus but as of a few weeks ago I have MS and I am 50 years old. My son is 26 now and his Neuro says his MS is very aggressive for his age. He has no quality of life and is almost bed written. He never had a childhood because of his dr’s and there judgments. His MS treatment is not working, he was on Gilenya and that his the strongest medication right now and lesions (scar tissue) in the brain was still forming. RA, Fibromyalgia, any connective Tissue Disorders will mimic MS. This is why I didn’t know I had MS because I thought I was having a flaree up from my other diseases. My son was diagnosed with rrms but it is spms now, I believe it was never rrms because he seem to have never gone into remission. They say that when you have rrms it will eventually go into spms. I see now that MS is hereditary, my daughter was also diagnosed months ago and she is 20 go figure.

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