Doctors have no idea what is wrong with me, please help!

[berth1dm]

My symptoms, seeing flashing lights in both eyes upon fast eye movement and when staring at objects, seing sparkles when looking at sky,increase in floaters in the shape of lines, circles and v's. Tingling in all body parts and cheeks, it comes and goes sometimes lasting for a few minutes to several hours, seems to subside with movement. Stabbing pains in face and body and muscle spasms, that have went away after 6 weeks. No muscle weakness. Have had neurologist exam me, mostly normal- hyper reflexes, two beat clonus on each foot and horizontal fatiquing nystagmus in both eyes. Doc said I have physiological hyper-reflexia, which causes the clonus and don't worry about it. Had a brain and C-spine MRI, both negative for MS. Eye exam normal. History of strabimus with surgeries on both eyes, have always had hyper reflexes, always been clumsy, surgery for endometriosis with Lumbar neurectomy for nerves innervating my uterus.  Have had tests for B-12, Thyroid, Lymes, Chem-Profile, Lead, Mg Level, all of which came back normal. I will be having Evoked potentials and Spinal tap done to look for Ms, but doc doesn't i have it. Questions, how reliable is MRI when initial MS symptoms present?, should i have confidence in my MRI that it is not MS, does initial onset of MS take years to show up on the MRI? and is it possible to have some weird nerve virus doing this to me? Noticed after taking a hot shower when I start cool off, I start to tingle more. Prozac not helping my symptoms. Also,I am at increased risk for developing MS? What else could this be? Future expectations? Thanks-db27

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

1.Just recently told by one of our MS experts that about 10% pts with MS have normal MRI at the onset.
2.see above, sometimes yes.
3.Possible
4.If you have first degree family members with MS then yes. It is also seen more commonly in young females.
5.Would have to examine you and review your films myself before giving you an accurate list of diagnoses. But some symptoms could be a peripheral neuropathy, thyroid disease, or disc herniations among numerous other things.
6.Hard to say without knowing the underlying diagnosis. The normal MRI is somewhat reassuring, but get the rest of the tests to rule out MS.
GOod luck

[tallgirl6]

Hi,
   I wanted to let you know you are not along, I have been experiencing the same type of symtoms and am on several drugs to keep it in check.  I have been through all the same tests and to no avail.  I went to Scripps clinic in Southern California, and they could not give me a diagnosis because there isn't a name for it.  The doctor had said he has seen several cases like this in the past few years, and thinks that no-one is doing any studies on it as of now.  An aquaintance has also been experiencing the same symptoms.  I was out of work for 3 1/2 months, and am back part time now. The one thing that frustrates me is that there is no way of knowing if it is a progressive debilitating disease, or if it can be treated effectively.  I just wanted to let you know you are not alone.....
Wendy

[graham]

Hi, sorry you are not keeping well.

I also have very similar symptoms to yours, and have seen neurologists and although some tests show abnormalities I am still no nearer a diagnosis than when symptoms first appeared about 5 years ago.

I did a lot of searching about myself, as you do when you feel desperate, and still have an idea my symptoms me be, in part anyway, down to a deficiency in b12.

You said that all tests, including b12, were normal but do you know what your b12 level was?

I know there is a great deal of differing opinions as to what qualifies as a "safe level" of serum b12. In the UK, where I live, it seems to be about 155pg/ml. In the US it would appear to be about 200pg/ml and there are plenty of people in and outside the medical proffesion who think this is far too low.

B12 deficiency can cause symptoms like ours and although mine was 289pg/ml in 98 and fell to 189pg/ml last year (through 197 and 192)I am still told this is normal and not responsible for my symptoms.

Of course, this may be nothing to do with your problem but do you know what your level was ? If anywhere in this region I would not dismiss it lightly.

I hope you have better luck than me.

All the best
Graham

[tallgirl6]

When I first started having mild problems of fatigue and some balance issues, the doctors were giving me shots of B12 every week and it seemed to help the fatique....It is an interesting idea to investigate....I'm not certain what the levels are, but my doctor is very open to trying things out.... She is as frustrated as I am because she can't find anything wrong.  

Thanks for the advice,,, i'll try anything at this point....
One thing that has helped with some of the twitching is cogentin.....and I have a real problem (that still isn't totally controles) with the muscles in my face being contracted all the time (also the muscles in my scalp...Soma a muscle relaxor seems to help this problem....

It makes me glad to have other people that can relate,,, although sad to know other people are suffering..

wendy

[graham]

Wendy,
I'm glad you have an understanding doctor, that makes a big difference when we are still undiagnosed.

I also have tightness in my face, in particular when I raise my forehead muscles and at the temple area.

You mentioned you were given b12 shots some time ago, I can only think that your b12 level must have been low enough for them to get concerned about it, which means this could have a big bearing in your case. Was there any sign of anaemia or megablastic (large) blood cells, did they diagnose or rule out pernicious anaemia?

As I said in the previous post, this is a very misunderstood and debated area which if untreated can cause significant damage to the central nervious system.

You may wish to try and get a question posted here where I'm sure you would get better advice than mine. You could also check out a site braintalk.org which is associated with Massachusets (probably wrong spelling) General Hospital. Click on specific neurological conditions m-z and click on the Peripheral Neuropathy Forum. There are many people very well clued up on this subject, in particular Rose who I'm sure would be only too happy to give advice. It is no problem getting a question on and replies are very quick.

Good Luck
Graham

Berth 1dm, I hope you are holding up well and get a reply soon from the neurologist. You might also have a look at the other site. Good luck also.

[berth1dm]

Doc., Well I had the evoked potential test done, visual, auditory and arms and legs.  All results are normal, within normal range for speed of transmisson.  HELP ME, What is going on with me, IF NOT MS, then WHAT?  db27

P.S.  Thanks for the posts Wendy and Grahm

[tallgirl6]

Hi everyone,
    Berth and grahm thanks for posting your stories, it gives me ideas to take back to the doctors.... Berth1dm  sorry the tests came back okay,,, I know how frustrating that is...

   I think I might post a simmilar question regarding MS as I had a normal readout and my EEG was normal as well...
They have diagnosed me with BPPN which is a balance disorder relating to the brain (I've been in pysical therapy to strengthen the muscles in body so I rely more on body cues if I am unbalanced instead of the inner ear (it and my brain don't talk so well.  The balance doctor said that some of the eye problems could be associated with this.... One symtom that I did not mention earlier is that my entire body I could not feel pain---it wasn't numb I could feel touch ect,,, but never felt any pains  I am elavil and zydone to help control this, but I think I was better off not feeling pain.  
   Another thing that the elavil is prescribed for is to help control migraines--- One possible explanation the doctors have come up with is that this is an abnormal migraine,,, I was getting migraine symtoms and had no pain associated.

   Thanks again to both of you for sharing your stories with me.,  I'm sorry that you both have to go through this as well.. It is good information that this is scattered all over the world, cause they thought maybe it was an enviromental cause.

Wendy
ps grahm i will look into braintalk