Multiple Sclerosis Community
Undiagnosed but ms fits symptoms
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
Blank Blank

Undiagnosed but ms fits symptoms

hi my name is stacey and i am 19. when i was about 13 i started to get chronic knee pain but doctors said that it was just growing pains then when i was 15 my knee locked for 3 weeks and i was unable to move it so i went to hospital and they said they had no idea and gave me crutches i was told to see my gp and he still said it was growing pains but refered me to a knee specialist who sent me for an x-ray of my knee i was told a few weeks later that it had come back clear and since i could now move my leg slightly even though i still needed the crutches that it was all in my head and not real.

then when i was 16 i started to notice my legs were weaker and i was falling over alot even though i was quite active and passers buy in the street would cross the road to avoid me or ask if i was drunk or high still the doctors had no idea and thought i was just clumsy. then the falls became more frequent and my speech became slurred sometimes but only minor.

i was constantly backwards and forwards to the gp and still they had no idea and eventually they refered me for physiotherapy. the physiotherapist only saw me twice and decided that i did not need to see him even though at this stage i had chronic pain, weakness, slurred speech and i was falling 4-5 times a week. after about 6 months of nagging my gp they refered me to a neurologist and i had to wait 6months for an appt! during the time i was waiting to see neuro i started to get blurred double vision and my speech got worse i could also no longer use stairs or walk more than about 200yards so i went to the opticians who refered me to an opthalmologist who diagnosed me with Nystagmus but he could not determine whether it was congenital or aquired although i did try to point out to him that i had only had it for a short amount of time.

in total i saw the neurologist 4 times the last being 2 months ago and in that time he ordered an MRI of my head and neck which came back clear, numerous blood tests which showed deranged thyroid results (im not really sure what that means) and a lumbar puncture which also came back clear although while i was on the ward waithing for the doctor to come do it my mum got chatting to another patient who had MS for a long time about my symptoms and this lady said that my symptoms sounded alot like her own.

to date my symptoms are: weakness in my arms, legs and neck(i have dificulty holding up my head at times) i have poor dexterity it is dificult to hold pens and cups and write and type,i get alot of pain in my joints and muscles, numbness and pins and needles feeling in my toes and down my arms to my finger tips, i have poor circulation in my hands and feet, slurred speech that ranges from minor to completly incoherent where my mother cant understand me, ringing in my ears, trouble eating (chewing and swallowing solids and liquids) i get flshes of hot and cold and i am quite often cold when others around me are hot i can barely walk or lift my arms most days and my legs shake anytime i walk. my joints often get stiff and for almost 2 years  i have been in a wheelchair and i have had to continue living at home as i am too weak most days to even get out of bed and i constantly need to have someone with me as i constantly fall and when i eat or drink i choke i am now at the point where i barely eat or drink and my mum has to constantly force me as i am too scared that my food will kill me as i had a bad experience a few weeks back when visiting my sister and i was eating a fairly soft meal and it got stuck in my throat and i couldnt breathe i literally cried for half an hour

lately i have also been having trouble breathing and i have been having panick attacks everytime i fall or nearly fall my mum has been searching the net alot since the doctors dont seem to be much help and she is convinced after many hours of searching that i have either CFS ME or MS and endocriology have ruled out hypothyroidism but my mum and i agree that my symptoms seem to fit better to MS despite the negative MRI and lumbar puncture

sorry it is so long but i have been through alot and i am so desperate for answers i wanted it to be as detailed as possible for the best help and advice i should also mention i live in England, UK.
4 Comments Post a Comment
1756321 tn?1377771734
Do you have your thyroid results? Deranged means "to upset the normal condition or functioning of" so not a good sign when it comes to your thyroid gland. In one study, 40% (89 of the 219 patients) with unexplained chronic fatigue over 1 year had proven autoimmune thyroid disease (diagnosed by FNA biopsy) regardless of baseline TSH levels. 50 had a TSH level within the normal reference range and 37 where outside the reference range.

Also, check vitamin B12 levels and make sure your results are at the upper end of the reference range since ranges are far too low in most countries. Vitamin D, iron and vitamin B12 are the three most commonly mentioned deficiency states with hypothyroidism. Vitamin B12 deficiency is one of the MS mimics.  

However, considering your extreme muscle weakness, Myasthenia Gravis (MG), a rare autoimmune disease of the muscles which results in muscle weakness and fatigue, needs to be ruled out.  Myasthenia gravis is associated with various autoimmune diseases including: thyroid diseases, including autoimmune thyroid diseases Hashimoto's thyroiditis and Graves' disease, diabetes mellitus type 1, rheumatoid arthritis, Lupus, and demyelinating CNS (central nervous system) diseases.

An article from a MG sufferer who was misdiagnosed for many years...

"What the Heck is Myasthenia Gravis?" by Kerri Sweeris - Yahoo! Contributor Network...

"June is Myasthenia Gravis (MG) Awareness Month. I am starting now to get the word out, and will be posting a series of articles on MG and how it effects my life.

The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:

"Some of the symptoms are:

*Double vision
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)
*Temporarily absent breathing (like you breathe out and forget to breathe in again)
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up...this is awful. My head sometimes just kind of flops over.)
*Poor posture
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly, especially after talking a while, or eating something cold. I actually have a card in my purse that says, "I'm not drunk, I have Myasthenia Gravis!")
*Difficulty producing the right words when needed
*Difficulty chewing
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip (I've broken many a glass! And my husband STILL makes me do dishes!)

I can honestly say I have or have had all of the symptoms listed above. It is not fun. A crisis situation (which means getting to a hospital ASAP) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscle by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)

I started having my first symptoms of this wretched disease in July of 1995, 6 months after I had chronically infected tonsils removed. I was 24. That was almost 15 years ago. I was undiagnosed until July of 2003, and went through hell and back in between to find a diagnosis.

Stay tuned for more information in the next article about me and MG."
3057345 tn?1340439281
hi thank you for your comment that is a real eye opener ive never actually heard of that but there are a couple of things in that list of symptoms that i have but i didnt think were relevant i am definatly going to mention it to a doctor
Avatar f tn

Please please see a rheumatologist.  I was 25 when I ended up in a wheel chair unable to walk and in excruciating pain.  The only issue I had as a child was a tendancy to dislocate.  I was eventually diagnosed with MCTD.  I am now working full time, and doing yoga 2x a day.  

What you describe is eerily similar to what all I went through.  The doctors initially thought it was MS, then DDD, prophyria, lupus, MG, and about 100 other things.  after an excruciating process, I ended up with a rheumy who had read about a rare subtype of MCTD, and sent blood to the single lab in the US that can test for it.  

It took me about a year to get back to "normal", it was hard and painful, but so worth it.
Avatar f tn
Every single symptom you describe can be caused by Borreliosis.  I think it is worthwhile for you to also look into Lyme Disease.  The European species of Borrelia causes more neurological symptoms than what is seen in the US. The knee pain you describe is very common in children.  Your current symptoms are consistent with late stage disease.  I have late stage Lyme and my symptoms also mimiced MS.

Ask your doctor for blood tests for Lyme. Usualy, labs do a two tier testing process where they run a screening test first, and then if it's positive, they run a Western Blot. Unfortunately, the screening test is much less accurate than originally believed.  Ask your doctor to specifically request the Western Blot.  Unfortunately, it can also be false negative also.  You are welcome to come to the Lyme forum to learn more to see if it is a possibility for you.

There is more info that might be helpful for you on

You might also watch the documentary "Under Our Skin."  
Post a Comment
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources