could this be ms?

[-leah-]

Hi, i'm 36 years old and have been having problems for 4 years.
The problems started with left leg stiffness and weakness, pain and visual problems in the left eye and burning shoulder pain on the left.

4 years later i have to use a walking stick to get around, both legs are stiff and weak, weakness in my left hand (drop things regularly), on and off burning sensations, muscle twitches when i lay down, chest tightness (especially on the left), right eye problems with pain and a dark area when i look up (on and off),

These problems seem a lot worse in winter when it gets colder and also pre menstrually.

I have had 2 EMGs, several brain scans and spinal scans (no contrast) all normal

My neurologist thinks its anxiety and referred me to a neuro psychiatrist who said i didn't have anxiety, i even went to CBT and was told no anxiety. My gp, friends and family don't think its anxiety either.

I last saw my neuro yesterday who still thinks its psychological but referred me to a colleague and also talked about me going to the main neuro centre in the country. "He said let me know if you find out what it is" many thanks your comments would be appreciated

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

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   The symptoms that you describe are non-specific and do not point to any single disorder.  The symptoms that you describe suggest spasticity (stiffness) in the legs and trunk muscles.  You also describe weakness in the left hand, sensory distrubances (burning) and visual problems in both eyes.  It sounds like you have had the first set of screening tests (MRI without contrast and EMG) without a diagnosis.  I would recommend taking your testing to the next level in search of a diagnosis including MRI with contrast of the brain, cervical and thoracic spine, a lumbar puncture (to look for inflammation with tourtelotte panel, IgG index, oligoclonal bands), visual evoked potentials (to evaluate for past optic neruitis), genetic tests for hereditary spastic paraplegia, and mitochondrial disease.  Given the level of dysfunction that you describe, one would expect some MRI findings if this was typical multiple sclerosis, and thus I would suspect an alternative diagnosis.  When things do not make sense, it is a reflex to attribute symptoms to anxiety/psychiatric disease.  I agree that it is often beneficial to get a second opinion at a major academic medical center.  When people have psychiatric disease with the symptoms that you describe it is generally due to a conversion disorder (which is a physical expression of some emotional stress) is completely unconcious on the patients part and requires considerable skill on the psychiatrist part.  I would recommend a second round of testing as described at a major academic medical center, and after all medical testing is exhausted then I would consider possible psychiatric diagnoses.
I hope this has been helpful.

[JCmcc]

Dear, "Leah"
   Please be advised that I am not responding to you as a medical professional with medical advice and that the information that I am sharing is conversational, educational, and factual.

   With that said I would like to say that I am sorry for all of your symptoms. Your story is a sad and familiar one. More and more I find that I am seeing people present these symptoms that suggest Multiple Sclerosis, et al, and nothing comes of it clinically for clarity. And, more and more, I am seeing a raging number of people having Lyme disease. In a sense the disease has been discredited for the simple fact that it is so common yet so un-reported and when people like myself see a possible case: people think it is all we think about. Wrong.
   I do not know what condition you have, but in fact, you do have a condition. You need to have a good IGENEX blood work up to test for Lyme disease and co-infections. Depending upon your region-this could make it much more certain.
   I hope that I have been helpful and to simply answer your question-MS means "multiple sclerosis=many lesions" and you have none, so, no.

Good Luck!
JCmcc.

[Between]

Just out of curiousity, are you in the medical field?

[JCmcc]

I am sorry but I am not going to discuss personal life here. No offense to you, though it may seem so, texts are hard to measure.

I am simply responding as a helper of persons.

Thanks,
JCmcc.

[sweet_g_grl]

Hi there..
It could be MS, it could be Lyme, it could be Hughes. But if you arent satisfied with the answers from your neuro, go to a dif one. To diagnose MS you need an MRI WITH contrast and/or a spinal tap.

and just because you have not lesions, doesnt mean you dont have MS. It isnt typical NOT to have any, some out there dont. That is how I started with my MS, no lesions, but here I am with it now.

[Between]

No offense at all. Just wondered since you said you were seeing people in your comment. Thanks for the reply. Take care.

[Annie62]

If you are walking with a walking stick then don't allow any neurologist to tell you it's psychological--or at least don't believe him.  You would be doing yourself a grave injustice.  If you allow that to happen you could be in a wheelchair by the time they figure out what is *really* causing your symptoms, and then your neurologist will move on with his life (and be telling more patients he sees that their symptoms are psychological) and you, on the other hand, will still be in a wheelchair.  A couple of the neurologists I saw needed to be in psychotherapy themselves.  As another poster said, a negative brain MRI doesn't necessarily rule out MS (also per the MS specialist that I just saw), especially if it wasn't done with contrast.  Also, if you have noticed a definite link to your menstrual cycle then it's possible you have some kind of immune-mediated/autoimmune disease, as lots of women with autoimmune diseases (neuro and otherwise) report a flare-up of their symptoms at certain times of the month.  I had exacerbations every single month (once to the point of partial paralysis) during ovulation.  Some women notice exacerbations during their period instead.  Good luck to you.

[JCmcc]

Leah,
  The remarks about no lesions, no MS, are in fact true. However, it is quite unlikely for most and I presumed that you had contrast.


Regards,
JCmcc.

[-leah-]

Hi thanks very much for your comments. I'm not sure that Lyme exists in the UK, I live in London but it would be interesting to know. I've never had any contrast with my MRI scans. I'm assuming that means an injection prior to the scans! To be honest i'm at the point now where I can't keep chasing a diagnosis any more as it is very stressful so I get on with my life as best I can. I know that a diagnosis means treatment but I can't let it take over my life as I have a young daughter to look after. My parents keep on at me as they are worried but it seems that the illness is all they talk about and i'm losing my identity. Anyway thanks again for your comments, I think a new neurologist is in order x

[young at heart]

AS I have read several of your post regarding MS.
As you stated multiple sclerosis meaning many scars or lesions.Just because lesions may not appear on a MRI does not discount MS not being there.I am one of the exceptions that have MS without lesions.5-10 % of MS patients do not have lesions.My diagnoses came from the CCF at the MS mellon institute.There are other test besides MRI's for a proper DX.
1.visual evoked potential(vep)
2sensorysomato(incorrect spelling)spinal tract(SSEP)
3.BAER evoked test.
4.EEG
5.VNG detects brain stem lesions done by ents or neroOtologist for vertigo in MS patients.
6.Lumbar puncture-checking for IgG synthesis,CSF IgG ,CSF albumin,neph,serum IgG,serum albumin.Oligoclonal bands,myelin basic protein in csf and serum
7.nerve biobsy to check for demyelination
8.muscle biopsy to check to see if demyelination from the nerves has damaged the muscle.
9.In absent of brain lesions they check for brain atrophy in certain areas.
10.internuclear opthalmoplegia(INO) a form of nystagmus seen in MS patients
11.reflex testing
12 babinski reflex
13.romberg test
14.hoffmans test
15.antalgic gait
16.Heat sensativity test
Theres many misconceptions on MS and testing.today the gold standard is a MRI.In early stages of MS,demyelination can occur and remyelinate without leaving any traces.Its not until the body's natural defenses are unable to repair its self does lesions appear.
I'm not discounting the fact and knowledge of Lyme Disease,there is need of more knowledgeable DRs needed and better testing,but not everything leads back to lyme.
Today theres more neurological diseases that are the on increase and all avenues to be checked for a proper DX.

[JCmcc]

In short, yes. Lyme disease is in the UK.
I cannot believe that contrast was not used. That is absurd. Yes, find a new neurologist.

Good Luck!
JCmcc.

[JCmcc]

Dear, Young At Heart,

   Thank you. You are very correct, however, a diagnosis of Multiple Sclerosis requires more than one lesions in different parts of the Central Nervous System dissmeninated in space and time. I know this first hand. That is the protocol. Other than that you have "possible MS" or "presumed MS." That is a fact.

Thanks,
JCmcc.

[-leah-]

Gosh, i've certainly started something now! To be honest when you don't work in the medical field you assume all that doctors say is gold. I mean they are the ones who have spent years at med school etc. I've learnt the hard way sadly but I know now that i'm not going mad thanks to your comments and support. Its funny how having a long term condition changes a person. I appreciate the small things in life and the silly things don't bother me any more as they would others. I really hope that this illness never reaches the point that it gets the name ms.
I want to get well again so much and live my life. To all of you who commented keep up the good work because you certainly helped at least one person this week. Thanks again love Leah x

[young at heart]

You have a great attitude,living with MS for 2 years was a struggle at first.I go and do and enjoy every aspect of my life.Me having MS,not probable or presumed as JCmcc stated has kept my attitude positive.

[young at heart]

I have been to the finest medical institutes ,cleveland clinic MS mellon institute and the MAYO clinic,In most literature on MS it does state that lesions should be seen on MRI's and in most cases that is standard protocal.You made the comments possible or presumed MS.I have seen 4 neurologist on getting accurate diagnoses.The testing they done came back conclusive for MS.Progressive.When MS becomes progressive lesions lesson and become undetected by MRI scans.
One ask if you were from the med fields and you denied to disclose that fact,thats your personal choice,but don't disregard a persons Dx when they have had extensive testing from the finest top notch facilities here in our states.I have had this disease for 2 years and bouts of spinal myelitis in the years past.In some patients with MS don't ever have lesions its contained to the spinal fluids,the myelin basic proteins become elevated and attack the nervous system.If caught in time and proper disease modifying meds are administered it keeps the myelin break down from crossing the blood brain barrier which causes the lesions.
MY MS is real as it has damaged my right leg and I rely on a leg brace,the micro lesions in the brain stem detected by VNG and BAER has damaged my hearing.INO nystagmus has effected my balance and ability to see at times.So oh yes this MS is very real,not presumed or possible MS.
Look at Terri Garr it tok her 20 years to get a Dx. todays med society wants to use the MRI as a gold standard,but its not always the best in everyones situation.Have you ever thought of how MS was DX before a MRI.Many neurologist still use some of the old standard test when MRI's are inconclusive.

[JCmcc]

Dear, "Youngatheart"

   I think that you are misunderstanding my responses. I have not denied nor discounted your diagnosis, in any way. You may be reading more into my responses. You are very lucky to have been able to been seen at major medical institutions and more than likely these neurologists felt both clinically and systematically that you do in fact have MS. This is an internet site and I am not here to dicount diagnoses. I cannot make that any clearer. Each and every post states a disclaimer.
   You admit that the norm requires at least two lesions which are round to ovoid or are Dawson's fingers. This is standard protocol. I do not know your situation and do not need to know. If you have a firm diagnosis from a neurologist, then, you have a diagnosis and you have a plan to follow. I am here to help those without answers.
   I cannot invest any more energy into arguements. This site was not intended for that and, I have been nothing but gracious.

Good Luck!
JCmcc.

[JCmcc]

To, All of you,

   I wish you well in finding your diagnoses or in following your plans. Internet type is hard to measure. I am not upset in anyway. However, I have lent all of the advice and support in this blog that I can.
   Please understand that often when I use the word, "You" I mean that in a plural sense. I would never, over the internet, discount a persons diagnosis.


Good Luck to All of You. :)

JCmcc.

[jan]

JCmcc is correct in what he/she is saying.  I for one had 3 lesions and was misdiagnosed with MS.  I had the Lyme rash, but 3 tests came back negative.  I found a site CanLyme and went to the symptoms page and convince my PCP to test me thru IGeneX and let me see a LLMD (Lyme literate MD).  I finally got my diagnosis of Lyme.  I have 4 friends diagnosed with MS that are now being treated for Lyme disease.  

MS is one disease that is always mentioned that Lyme mimics.  I haven't found a complete list of diseases it mimics, but read somewhere that it's 380.  I found a dr's page and he said it can mimic any disease and any symptom.

JC, did you get my email?  If not, maybe I went into spam?  Let me know.

[ilmf]

You said you were diagnosed with MS and have no lesions.  Did you have a spinal tap?  I also have symptoms of MS, I think very real symptoms, but I did have an MRI and no lesions were found, but I did not have a spinal tap.  My neurologist did not feel in any way it is MS so he did not feel I needed to have it done. I am scared to have it done for fear of MS.  I give all of you credit on this site, you all seem so strong.  I do not feel I could handle it that well.  I just don't know what else could cause all my tingling sensations?  Thank you for your help!

[young at heart]

Yes,I had a spinal tap.It isn't as bad as it sounds.My DX was based on several test,visual evoked potential,somatosensory evoked potentials,emg/ncv. A VNG for the hearing loss.
My brain MRI showed atrophy consistant with MS,the evoked potenyials were abnormal,the VNG showed hearing loss that was neurological extending from the brain stem.balance test,basinki,pin ***** test hyper reflexes except absent in right foot.
If you are not content with your present neurological care its always good to seek a second opinion.
I had several symptoms that lead to a DX.