MS or Not

[zombie32]

I am 32 years old male having gone through the following symptoms from July 2007:

1. Age : 32 male
2. Fatigue
3. Pain in left arm (All heart related test were clean)
4. Numbness in left pinky finger for almost a year before in july the pain started.
5. August 1st week, very weak feeling, tingling in hands and feet
6. If i ran I felt much better actually, at rest would get muscle spasms, weakness
7. Area above neck felt hot/warm followed by dizziness
8. Ringing in left ear, and weird sound sometimes as if I am sitting at 30,000 feet above sea level
9. No weight loss, no vision problems, no sexual or bladder issues
10. 3 MRI's done in past 6 months, No lesions or anything, HOWEVER, the 1st MRI showed a 5mm lesion in cervical spine, so I was asked to do another one after 3 weeks and was told that the 1st one may be just an artifical so the 2nd and 3rd MRI's showed NO lesions at all. MRI of cervical theorasic and brain, I was told were beautiful.
11. My neuro (who is not a MS specialist) at Johns Hopkins told me that You dont have MS and come after a year if you similar symptoms and worse case situation, we will do another MRI.
12. Spine Tap results were normal.
13. Symptoms still persist. They are not getting worse, however, very annoying at times specially the weakness.
14. I have looked at McDonald's criteria, dont seem to fit into that, since my relapses are like every 3 weeks, and also no lesions.

I believe for MS you have to have lesions, and lesions develop long before symptoms, what am I dealing with here.

[zombie32]

No. None of my MRI's ever mentioned 'cerrebellar tonsillar herniation or ectopia' . However, I had disc bulges at T6 and T7. Nothing in Cervical area. Brain responses were normal.

Heather: I have not been tested for Fibromyalgia or even mentioned anything about it. I have seen a very senior Doctor at Hopkins and according to his diagnosis its nothing. He believes my nervous system as well as my Cardiac system(tested by another physician) are in perfect condition. He also felt a bit worried when I mentioned that I almost fainted one day when I got out of warm tub. But he said if you are fainting, its not MS. But if its not MS, then what is it? I have just not been told and I am worried. I am thinking of seeing a 6th doctor (3rd Neuro) and an MS specialist at Hopkins. May be he can tell me you dont have MS and then ill be satisfied. May be its all in my head.

[KatMW]

Has any of your MRI's ever mentioned a 'cerrebellar tonsillar herniation or ectopia' with a number such as 3mm to 20mm?

[Heather3418]

Yes, if they are true symptoms from MS a relapse would mean that you have continual symptoms for at least 24-48 hours, with no break from the symptoms.  It is rare to have a relapse last for only 48 hours in someone diagnosed with MS, but it happens.  Normally you will hear that the relapses last weeks or even months.

I have read that on MRI, that if a patient has an MRI every day, in someone with a diagnosis of MS, that they can "see" a lesion appear and disappear over a 24 hour period.  I do not know if this information is accurate and I wish I could remember where I read that, so I could direct you to that article.

If all of your testing for mimics of MS have come back clean, I would be comforted by that.  Does your anxiety about life in general cause some of your symptoms?....I don't think anyone knows.  But...I can say with experience, since my daughter has IBS...that she seems to have lots of problems when she is under any kind of stress.  When the stressor is removed, her symptoms disappear.

Have you been tested for Fibromyalgia?  Do you have "trigger points?"  You may want to read up on Chronic Fatigue Syndrome and Fibromyalgia.  You can 'google' a search of either of these disorders.

I hope that you will keep us posted on your progress.  Most importantly, you have to get this "anxiousness" discussed with your doctor.  A short term of medication and some "talk therapy," may find that your symptoms seem to abate.  It's worth a try at this point.  I do not minimize your symptoms of anxiety at all...I had anxiety and panic disorder in my 20's (I am now in my 50's) and I know how it affected every part of my body.

Hang in there...hopefully some answers will be forthcoming in the New Year.

Heather  

[zombie32]

Thank You soo much for such a detailed reply. Yes I have done all the relevant blood work and they also checked for lyme disease. Everything was normal. Can I ask you a questions? When you say relapses should last more than 24-48 hours and can last for weeks also, what does that mean. Does that mean that if I have a tingling sensation or tightness in neck or weakness in legs (combination of all 3 or just once) should they last for 24 hours CONSTANTLY? My symptoms are like come and go. For example, my last night symptoms of neck tightness and ringing sound in ears is gone this morning. Infact this morning I am normal. May be weakness in legs but thats just like it used to be before they thought I might have MS. So my question  is, are MS symptoms going to stay all day (every minute of the day) without any improvement. In my case, only tiredness is the symptom that stays like that for a day, but next morning its ok. However, these other symptoms only sometimes last for minutes or may be 4-5 hours at MOST.
I think they have ruled out tumors or anything of that magnitude, thats why my neuro told me I dont wana see you for a year, however, may be he said so since my wife was sitting next to me. Is that a good idea to have your loved one sitting next to you on such an important visit, well I should not have told her. Anyways, thanks for the help and I'll keep in touch.
Ohh yeah- Forgot to tell you, I was diagnosed with IBS almost 10 years ago. I am also a very anxious person, and people say that could also trigger MS symptoms.  Also I get these relapses mostly when I am under stress, e.g work deadlines etc. I might go absolutely fine in the morning and get back drained at night.
Have a great holiday and Merry Christmas to you and your family.

[Heather3418]

Your symptoms are alarming and have been followed correctly by your doctor.  The amount of MRI's he had ordered are astounding, but he knows what he is doing.  Since if you DO have MS, the course for a man is usually worse than a woman, your doctor is not taking any chances.  

Your symptoms if they can be compared with MS, should have disctinct relapses and remissions.  Your relapses should last more than 24-48 hours and can last for weeks or months WITHOUT any improvement.  Not just periodic symptoms that come and go.  This is why your symptoms do not suggest to me, that they are from Multiple Slcerosis.  Does that mean that you do not have MS?  NO!  I would never suggest that I could or could not diagnose MS.  I am not an expert, only a woman that has lived with MS for 12 years.

If you have ANY symptoms in one eye...any eye pain on movement, loss of sight, etc., contact your doctor immediately.  Do not wait for your next appointment.  This is an urgent symptom of MS.

Have you had any blood work or other testing to rule out other disorders that mimic MS?  If so, what were they?

I'll do my best to try and help, as will others who will probably not be on the forum through Christmas.  Hang in there.  You will get other responses.

Merry Christmas to you and your family and welcome to the forum.

Heather

[zombie32]

Just an update of todays episodes:
Felt tightness in neck area and buzzing sound in ears. Sometimes tingling kinda feeling in neck and back side of brain. Tightness in neck sometimes proceeds to chest also. My wife does not know of latest symptoms nor I wana tell her, she is 7 months pregnant with our 1st child. My episodes only last a few minutes (less than 10) however may run for all day off and on. Yesterday, I had this weakness in legs(lower area) toda both arms are weak. Not too bad, I can lift things but its like stiff/tight and weak. Very weird feeling sometimes cant even explain. Have other people felt the same symptoms. I am new to this so really dont know whats happening.