Still looking for a diagnosis

[Halash]

I am still terribly concerned that I have MS or some other "like" disease.  I have now seen 3 Neuros in the past 1 1/2 yrs. In the last month, Neuro #3 ran EMG, EEG, VEP & auditory EP, Muscle test w/needles (forget name), SEP, SSEP, plus thorough neuro exam-all Normal.  He concurs with the 2 previous Neuros that I don't have MS.  However, I still have neck and back pain, fasciculations, numbness, occasional headache across top of scalp with numbness and a long history (since highschool-I'm 41) of occular migraine with occasional speech slurring, and once had a heat feeling on my left hip that spread to my abdomen and had a couple of electric shock feelings on the side of my neck that gives me pain.  I don't have loss of balance, heat intolerence, gait or vision issues, vertigo, bowel and bladder problems, tiredness.

My LP: Full MS panel-incl. Myelin BP, ANA, Sed Rate-all NORMAL.  No values were even borderline.  My TSH was low-normal .90 (ref. .46-4.0)But curiously, my Lyme Essay was positive 1.45 (ref. > or = 1.20 positive) Western Blot neg. No one thinks this has any clinical sig. WHY??

2 sets Spine MRI with GAD-Disc dis. cerv. to lumbar and some spinal cord compression with no MS type lesions.

2 sets Brain MRI- 4 small, non-enhancing lesions not in "typical" pattern for demylinating disease, but could be.  Dr's said these are old lesions.

I've had all these symptoms since my teens or 20's, just not all at once.

Could this all be related to my spine and the MRI is a non-specific finding?

Did I have a virus?

What other tests would you suggest?

[momx]

Sorry this is so long...I didn't think it would be, but I really need help.
I too am confused. 2 nero's say MS and 2 say no...I had 2 grad maul seizures a few years ago. Prior to that, about 5 years, I went a nero to ask about severe dizzy spells, fatigue and double vision. It was as if I was a kid and spinning around and around until you fell down and you couldn't get up. I did have some headaches but, I thought it was just due to high blood pressure. During this time in my life, especially when I had my seizures, I was really stressed out with my older sons and problems with them and, then, when I had my first seizure, my father was dying. I just said it was stess and I am the kind of person who doesn't say anything to anyone and tries to do it all.  Then, I had an incident when I couldn't speak clearly. It was just garbled speach. I was still experencing these awful dizzy spells and doulble vision. Also, for quite some time I have had a memory problem, which seems to have gotten worse. This can be depressing when I can't remember what I did a or even happy times with my grandkids. I have to write everything down because I just can't trust myself to remember. I couldn't remember once which way to turn on the way to my son's house and I have been going there at least once a week for years. My hands and feet seem to have poor circulation too because they are always cold it seems. I am on Dilantin for the seizures and do not have those bad dizzy spells or double vision anymore...just mild dizziness or lightheadedness once in a while. I do have bad balance and coordination though and have fallen from just loosing my balance a few times. I could never take a DWI test because I can't walk a straight line heal to toe and can't close my eyes and touch my finger to nose. I have had all the tests and just repeated them. The MRI shows brain lessions and new ones since the first time a few years ago when I had my seizure. All other MS tests (EVP, spinal, thorasic and spine MRI) seem to be okay. Yet MS is the diagnonis and my nero would like to start me on Avonex. I feel so scared and alone. I don't know what to do.

[Karen03]

Hello Halash

My appointment was a bit disappointing as he doesn't seem to really be giving me a diagnosis. He just has me trying therapy which is fine but physical exhertion causes me a great deal of pain in my upper back where the syrinx is mentioned on my MRI. I did express my concerns to the Therapist and he wants to call my neuro doc and discuss things with him.

Yes I have had the neck pain that goes into the back of my head. He says that is just my neck herniation and I have excercises to do. While standing bend your head sideways as if to touch your right shoulder with your right ear, then switch sides to left.

Also he said just looking side to side (head only movement)about 5 times 2x's per day should help with those pains.

I hope this is helpful to you.

Hugs
Karen

[Halash]

Maridane:

Thank you for your suggestion.  I went to that website and yes, I have some of those symptoms, especially the severe neck pain and headache.  However, with 2 MRI's I would assume that the Neuros would have picked up on that but as I have another appt. this Thursday I will make mention of it.  Again, thank you for caring.

[Halash]

Hi Karen:

I was wondering how you appt. went with your Neuro on Monday.  I hope everything is okay.  Do you ever have really severe neck pain that sometimes radiates to the back of your head?  I've had that for the past week.  It was so bad that it actually hurt to swallow.  I suppose my neck issues could cause that.  I have another appt. with my Neuro on Thursday.

[maridane]

Please consider checking out ACM 1. This is Arnold Chiari 1 Malformation...... a good site to go to is www.asap.org
click on resources, then find members symptom list, click on that and you may see yourself there.. It is worth a look see.
maridane

[Karen03]

Hi Halash

I'm so glad to be able to speak with someone who knows how I feel. I don't have the weird feelings in my arms if I sit funny but I do get a pain in the back and upper abdomen when I hunch over at my pc too long. I also have a bad left shoulder which is getting worse over the years as well, it burns and I get this awful stabbing in my left shoulder blade right in the center of my back.

I do get the pain you described as someone sitting on your chest but mine is my upper back, it can hang around for days yet it comes and goes like nerve damage, it can be horrible and then 5 minutes later it eases up alot. Today I have a strange feeling in the back of my head and a small spot on my butt that felt like it was burning...this is all new and is scaring me to death. I feel like whatever it is is getting worse and I'm worried sick.

I have a followup appointment with my Neurosurgeon on Monday again and I have alot of questions for him.

Karen

[Halash]

Hi Karen:

Yes, sometimes I get a pain (not severe) in the middle of my chest, almost as if someone were sitting on me.  I also get a strange pain on my right upper chest that sorta feels like it's located in my lung.  I've had a chest x-ray and mammogram, so no problems related to those areas. I have disc disease from C2-3, C3-4, C4-5, and C5-6 w/some thecal sac contouring.  In thoracic,I have disc disease at T4-5, T5-6 amd a large bulge at T6-7 that slightly compresses the spinal cord.

If you lift alot of heavy things or sit improperly, kinda hunched over, do your arms sometimes feel funny almost as if they are not going to work right?  That's happened to me a few times and then when I sit up really straight I get a slight pain in the upper back and then my back will tingle from the shoulder blade area on down.

I've posted twice, my other post was in January.  If you read both I've had alot of weird things going on in the past 2 years or so, and yes, I'm beginning to think everyone around me thinks I'm nuts too.  I just went back for a follow-up with my 3rd Neuro this morning and he still thinks I don't have anything serious.  If I didn't have these brain lesions I wouldn't care about some neuro symptoms or pain.  I hope someone can give me a clear answer some day.

[Karen03]

Hi I have similar symptoms that you have and was found to have a thoracic herniation at T11 and T12. I also have on e at C5 and C6 in my neck.

Did you ever get aches in the chest area with your pain? That seems to be the one you didn't mention so i wondered if you have it. I can't seem to get any answers about why I get this ache in my chest area with this. It all started at the same time too but people act like I'm nuts but others say it's expected.

Thanks
Karen

[Halash]

(Ran out of room)  I also wanted to mention that the two MRI's 1 year apart were identical-no changes and I do not have muscle weakness.  My sensory issues are usually on both sides or they travel from side to side.

Thank you for your wonderful service.

[CCF-Neuro-M.D.-JT]

It's possible that the symptoms themselves may not all be related to each other let alone to the spine.  For instance numbness across the scalp is not likely to be from the spine and probably not related to fasciculations or the heat feeling in the hip. It's true that MS can sometimes present with vague neurological symptoms, but with extensive testing including MRI, labwork, and other electrophysiologic tests as well as neurological examinations all coming back normal, it's very unlikely that you have MS. As for the lyme assay, I would need more information as to what antibody was actually tested and what kind of assay it was to give an accurate opinion, but your symptoms do not sound like the manifestations of lyme disease nor do they sound "viral".  And I cannot give an accurate opinion on the MRI as I have not seen it myself nor do I know where these lesions are in the brain.  But with no change in lesion distribution or number, it's possible they can be nonspecific as you suggest.

Finally, as the symptoms don't seem to localize to one specific part of the nervous system, it's hard to find the appropriate diagnostic test to do.  However, you've had what we call the shotgun approach in which multiple tests were run to find the cause of your symptoms, all of which fortunately returned as normal. I can't think of any other tests to do at this time.  Treatment-wise, you may want to try some physical therapy for the neck and back pain, vitamins and exercise for overall health, and possible pain management clinic for your headaches and chronic pain. Good luck.