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Multiple Sclerosis Message Board


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HI there. Your post has many questions so lets see if we can decipher them.

The main thing you asked- would it mattter if you werent seen by a MS specialist urgently? The answer is normally no- MS is a progressive disease, it wont go away and it eventually will progress; however the name of the game is to stop progression. Without a diagnosis, you wont be able to go on any drugs which may prevent future progression and stop new lesions from forming (thus reducing new symptoms, which could become permanent). So the question goes back to you- are you willing to take the risk that things may get worse and they may have been preventable if you had gone to the doctor?

The second part that really bothers me is your opthamologist. Are you sure you didnt see an optomotrist? A good opthamologist can look behind the eye and tell if there is inflamation. You are describing optical neuritis almost to the T. In which case, the optical nerve is inflammed and causes everything you said you were experiencing. I wouldnt hestiate when it was my eyes, I would find the best neuro-opthamologist out there and get an appointment immediately.

Every symptom you listed, with the exception of dropping things and having trouble breathing deeply and your past experience with the wrist thing - those are NOT MS symptoms- sound like MS....swallowing can be a MS related incidence...tripping and balance problems, definately. Random muscle spasms, sometimes....in some MSers more than others, memory, cognitive, forgetfullness, train of thought, all can be MS related..itching can be a sensory problem, which actually can be MS related.. the dropping things and breathing deeply may simply be anxiety related, which can be a subset of MS...

But all of those things would worry me. They arent going away? They are still happening? A MS Specialist is not going to poke and prod you, they are going to gather up your past test results (you should keep copies of everything) and they are going to reorder things which need to be reordered. They will do blood work to rule out deficiencies and they will take an extensive history and physical of you... (these are all questions). They will do a neuro exam, as far as balance and reaction times- but you WILL get answers. Is it urgent? No, but how important is seeing or walking unassisted to you? If you ignore these things long enough, you run the risk that they will be impacted down the line.

I know its alot to take in, but you asked for advice...and this is mine. I wouldnt wait to start investigating this..especially your eyes. Many a case of ON has led to a MS dx....see a good opthamologist, or a neuro-opthamologist and get your eyes checked out...even if they miraculously get better tomorrow, a good doctor will see the residual scarring which will prove if you had or have Optical Neuritis..

please keep us posted? And, good luck to you!
Nikki
Hi MS Diagnosis.

Well, it took me 72 hours to have a formal MS diagnosis...and it really only took 2 hours in a MRI to have a neurologist say "I think its MS". He then sent me to a MS specialist to review what he already suspected..and it was confirmed the following day. SO, no, its not true it takes years.....although, in rare cases, it could. MS is so individualized, its hard to know for sure how the MRI will show up, or what will be seen.

Now, heres one for you. There is something called the (revised) McDonald criteria. Every Neurologist in the country MUST use this to dx MS. Guess what? The spinal tap isnt on it....the reason spinal taps are given, is to rule out other things. PML, meningitis, and other brain infections mimic MS...and they have definitive tests all done with a spinal tap. Things like Lupus, Lymes, Rheumatoid Arthritis also present very much like MS, they are ruled out with blood work...so, those six vials of blood had a purpose. He probably also checked you for vitamin deficiencies. Believe it or not, low Vitamin D can cause many of the problems you are mentioning...so can low iron and low B.

Its not unusual to have to drive to a MS specialist, unless you live like I do- half way between Philadelphia and NY, there arent an abundance of them in every area. And, its not unusual to have to wait 3-6 months to see one. SO, I might suggest that you call now and schedule it for spring. March- sometime in the not so close, but not so distant future. This will give you time to mentally prepare yourself, get together copies of ALL your films, reports, blood work, etc- and see a specialist. BY having everything with you, you are giving them a fighting chance at less poking and prodding and less repitition of tests, although they probably will repeat the MRI by that time..it should be done every six months. This is my suggestion. I understand your hesitation- but I also think something is going on and you dont want to wait until its too late to do something about it.

As for your eyes. You seem to have some confidence in this opthamologist. If you do, than I do. If he says your eyes are healthy, we will believe him..but, whats causing the problems? Something is causing the problems! Again, seeing a good MS specialist will get you answers.....I guess the question is, do you want them?

Im so sorry that you have gone thru what you have. Its horrible that you have been made to feel that the healthcare system has failed you. Youre obvioulsy not stupid...and you have every right to be frustrated. I think you DO need a few months to decompress from all this; however knowing how long it might take you to get an appointment, i would still call soon. Bet you cant get in until march/ april anyway.

If you continue to have problems, and they become serious, find the nearest large hospital close to you...and go to the ER. If its a teaching hospital or Univerisity hospital, all the better. Youll be admitted, tests will be run and you will get answers. They dont discharge people without knowing whats wrong with them. Sometimes, thats the only way to get anywhere. And, sometimes, you get lucky and find the right doctor. I did, I know it can happen.

Youre in my prayers..and Im thinking of you...please keep me posted.
Nikki





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