MS Question

[Sherry1019]

I am 48 yr. old female. I was already disabled due to spinal problems from an auto accident, but all of a sudden 7 years after accident I am getting significantly worse over a 2-3 month span and worse yet overnight 3 days ago (almost like I had some sort of attack). I had an MRI in 05 which showed 7 demyelinated lesions and the advice was to repeat MRI in a year. A year later the MRI was "normal"?? Now it is 6 years later and I am completely disabled with severe neuropathic pain everywhere. I have frequent "humming" in the lower half of my body, ringing in my ear, blurred vision, vertigo, ataxia, trouble forming words due to muscles in face not working properly, tremors/uncontrolled movement/twitching (very bad in am) of head, arms, shoulders, facial muscles, fingers and legs - especially when trying to isolate and control that muscle. Each am I wake unable to either close my fingers in a fist or open them from a tight fist (severe spasticity) and it takes hours to even become able to pick up my cup of coffee. I nearly fall all the time. My ankles and knees are spastic in am and barely bend and it's quite stiff and painful to walk with walker. My legs, (especially left) are heavy and drag. I get horrible pain around waist when standing - like a tight rubberband around my waist. Lately I have been experiencing real shallow breathing - like it's no longer an involuntary thing - I have to take a deep breath every few minutes to get enough oxygen. When I try to smile my face muscles feel weak and numb - unable to smile without them twitching terribly out of control. I am very heat sensitive - it makes me sick to be too warm. Muscles and tendons are extremely stiff after a few minutes of inactivity. Bladder doesn't ever empty all the way. Incontinence. I get numbness and tingling sensations on outside of calves, itching on bottom of feet and severe swelling with pitting in lower legs. I lose my train of thought and have problems word finding. When trying to read I see the word, but my mind reads it as another word. Like "lawmakers" I read as "lawnmowers", etc. I transpose letter when writing like instead of "in" I write "ni". I cannot stand with eyes closed without tipping over or backward. I cannot close my eyes and touch my nose. I get feelings of being touched by someone who isn't there.

As I said, my first MRI showed demylenation. My second showed lesions but not demyelination. My most recent 3rd showed several plaque areas around the watery part of the brain (this is all I can remember from my phone call with Dr.) but he could not confirm MS. We asked the radiologist to compare the previous MRI with the most recent but all I got from the nurse today was "no change". What does that mean? I'm so confused! Does that mean I don't have MS after all? Or should I push for a consult with a neurologist? To me, there is no doubt in my mind...I am in my body and I know the degree of decline my health has taken in the past 2-3 mos, SOMETHING is causing it and I have most, if not all the symptoms of MS. This morning I fell asleep sitting up and my head dropped so it put strain on my neck. when I woke a few minutes later I had significant uncontrollable head movements.  I cannot type a text msg because I cannot control my right thumb (or right pinky). The more I try to control a certain muscle the worse the tremors. I believe I have MS, but I wondered if anyone else had any opinions and if you think I should push for a consult with a neurologist (maybe get a spinal tap or other tests). I will no doubt fail a cognitive test.  

I appreciate any comments. I just wanna know what's wrong with me.

[Sherry1019]

Thanks for the advice Lulu. I literally woke up in tears this morning as the reality of yesterday and the possible future fallout sinks in. I think it's good advice to not share that info in March appt.

I have very good intuition so I am going to continue trusting that I know what's going on with me much more than some doc who has known me for 10 minutes.

I will stay in touch. Thank you again for your support.

Blessings

[Lulu54]

Hi and welcome back.  The advice I would give you is when you see this neurologist in March, do not mention these doctors and this appt at all.  Of course if you are asked, you have to admit it but don't go volunteering that you have seen this group.

I am so sorry you have been subjected to this type of treatment.  Conversion disorder is very rare but also a real disease,  and if that was your diagnosis 7 years ago, you should have also been treated for that.  I am a big believer in instinct - you say you have known something is wrong and have known that for some time.  Keep looking for someone who can help find that answers - maybe it will be the neuro you see in March.

Stay in touch, ok?

Lulu

[Sherry1019]

Thanks Lulu. I haven't been on here for a bit so I'm just seeing your response. I will def break up my comments into paragraphs, no problem. I made a huge mistake of not waiting until end of March to see the U of Mich MS specialist & at the prompting of my PCP I went to just a Neuro doc in Detroit. I had forgotten this was the same group of docs that were paid cash $ by my auto insurance co to evaluate me for the accident litigation and they were paid to testify against me in terms of having any injuries. She totally called me a liar.

I brought a CD of 3 brain MRIs all with several lesions and a printout of my MS tracker. She did a physical exam with all the pushing and pulling of every muscle and I would flex as hard as I could and she'd say, "ok" which is what I thought meant "I'm done testing that muscle" and my reflex to the "ok" was to stop flexing. Also, I could only flex as hard as I could for a few seconds - the muscle was completely exhausted. After it was over, she smiled at me like I just got caught stealing and said, "I don't think you have MS, because when I test your strength you purposely stopped flexing so that means that you are not being honest about your strength". She said she does not think my symptoms are neurological at all.

I was shocked. I was on my way home before I realized they were the same group of neuro's that testified against me and claimed I was not injured. They called it a conversion disorder.

But when I asked her if my symptoms are not neurological what could be causing the weakness and spasticity she replied, "your fibromyalgia". Which, isn't that a neurological illness?  Also, since when has fibromyalgia caused temp blindness, eye pain, double vision, tremors, head and arm posturing, balance probs, ingesting food/saliva into my lungs, etc? I cried all the way home because I felt like I had been not only blown off, but accused of faking.

My question is, how can a neurologist tell me I def don't have MS when there has never been a lumbar puncture, thoracic or cervical MRI? I feel defeated but I am 90% sure I have it. I am going to keep my U of M appt in March but I just think any letter this doc writes and puts in my med records is going to follow me like the plague and I will have a really hard time getting any doctor to trust me.

Do you have any suggestions for me? I feel like I've been screaming for 7 years for them to address the degeneration and I'm only in a worse position now. Thank you for your help.

[Lulu54]

Hi again, Sherry.  Thanks for the explanation, that makes more sense to me.    The thing about MS is that no two cases are the same, where you are having symptoms show up are going to be strictly unique to you.  That makes it so darn frustrating at times to get diagnosed.

I trust the new group of docs at U. of M.  will work diligently to get you some answers.  That type of deterioration doesn't happen for no reason and I trust they will find the cause. So much of what you write about sounds neurological to me but I'm no medical expert.

Good luck and stay in touch,
Lulu

PS if you can do us the favor to break up your text into smaller paragraphs that would be great.  Many here have trouble with their vision and these longer groups of text tend to blend together.

[Sherry1019]

Hi Lulu. No, I guess I misunderstood my doc and called the nurse to clarify. He called me Wed to tell me that he wanted to be sure I understood that he believes I have it (MS). He clarified that I've had 3 brain MRI's in past 6 years and all three show lesions with demyelination. He said, "That IS MS".  Especially with all the physical symptoms I present with. I had the car accident in 05 that certainly caused herniated disks, but I remember my first neurologic episode way back when I was 15. I had severe pain in limbs and swelling and missed 3 mos of school - unable to walk. They never figured out what it was. Then I had a horrible run in with Mono in '98 that lasted weeks. I've had problems since then with energy and heaviness in legs, swelling, etc. I don't know if doc is sending me to an MS specialist, but it will be at the neurology dept at U of Michigan hospital so I feel like I'm in good hands. My thing is, it's been 7 years since the car accident and a person doesn't just get worse 7 years later from trauma. There are 7 T2 hyperintense lesions. But I need to get the LP and the MRI of spine next. The reason I believe it to be MS is because I am so much worse and it happened quickly over a period of 2 or 3 mos. I'm not sure there aren't "new" areas of damage they aren't able to see yet. The machine was only a 1.5 strength magnet. I know the changes going on in me in terms of degeneration and they are remarkable. I have the MS Hug - have had it for years and didn't know what it was. I have blurred/double vision and even a brief black spot in left eye. The tremors, weakness and head movements are dramatic, along with facial paralysis and slurred speech, among lots of other symptoms. This has not just recently started, I've had it for many years. But I am in some sort of extreme flare now and I really think I will have to break down and go to a wheel chair. It's just not safe for me to try to walk anymore. I'll just be glad after I see the specialist. Thanks, I appreciate the suggestions.

Sherry

[Lulu54]

Welcome to the forum.  Your medical history certainly leaves a cloudy picture as to what might be going on.  Spinal injuries can cause many neurological deficits.

I'm confused by the comment that there isn't demyelination anymore - lesions are evidence of demyelination. You definitely should question the doctor on that report.

Kelly is right- you need to be evaluated by a neurologist who specializes in MS - it is a very complicated disease and often difficult to diagnose in the early stages.

Again, welcome and I hope we will see you around.
Lulu

[Sherry1019]

Thank you for the advice.  I appreciate it. I'm seeing a neuro guy soon and I'm sure I'll know more then.

[anon07072023]

I think that you should most definitely seek the advice of a neurologist - particularly one that specializes in MS.  

The doctor that is currently ordering the MRIs - are they using MS protocol for the MRI procedure?  It sounds like you have a lot going on with all of your symptoms.  I'm sure you can't ignore them - nor should you.  You need to find out what's causing all of this - especially the breathing issues.  

Take care,
Kelly