seeing Dept Head of Neurology @ teaching university tomorrow

[steelmagnolia]

Well, after the "fiasco" with the doc that left practicing medicine altogether right in the middle of my testing and trying to get a diagnosis...I called MUSC (Medical Univ. of SC) here in town where I live, dept of Neurology this morning. A very nice, compassionate lady took my call and I told her what was going on and that I really didn't trust the other office for the referral, given their track record. She checked and they had sent over PART of my file....and not even the most recent MRI!! At that point I was really angry. So I called back the original docs office and demanded to either speak with the head doctor of that practice or the office manager or I was going to a lawyer!!! AND, I meant it!!

So, the office manager got on the phone and let me rant about her doc that quit his job. She obviously is having major problems with the practice because of his unprofessional manner. Anyway, I told her that I called to make and appt at the teaching hospital and that they only had partial records. She was very nice and listened and then sent them everything that they had in my chart, including notes from my regular doc showing the tests and blood work he had done, checking my B12 levels, etc.

So, tomorrow morning at 9am I have an appt with the Dept Chair.....at MUSC. I looked him up online and he seems like a very nice guy and the lady told me he was. He has a kind face in his picture. Thank God! I need someone to listen and take me seriously after the ordeal I have been through to this point. Dealing with these doctors at times has been as bad or worse as dealing with all these symptoms!!

I went on an out-of-town trip between last Thursday and got back home on Sunday afternoon. We were out in this South Carolina heat and humidity alot and it really was rough on me. My hands are in a continuous tingle as well as the bottoms of my feet. My hands also feel very weak. We were at big church conference thing which was SO good and I enjoyed it so much. But, I kept falling asleep in my chair with my head dropped down to my chest. I couldn't keep my eyes open several times and so I missed some of it. Does this happen to anyone? Also, my stomach was really acting up, too. Do any of you get diarrhea and lots of gas? I have been taking Gabapentin to help with my symptoms.

Thank you all for your help. The other doc I saw was not interested in looking at spine MRI on me. I don't know why, especially since I have had 3 operations on my neck and have a metal plate in it. I had ruptured disks that needed the surgeries....and seems I heard somewhere that people with these types of injuries were more prone to MS? Oh and if I didn't tell you, I am 55 y/o, 56 in 6 wks. I did read its not as common in older folks, but more progressive? I will say that since I started having some symptoms that I really was suspicious of, especially the numbness and tingling there has been no let up, but probably more symptoms in more places. Thank you all for your thoughts and caring. I am looking forward to the appt tomorrow.....I need to have a competent person check it all out. Blessings to all of you!!

[jazzgirl]

Much good luck, Steel. Keep us posted!

[KoKo]

Hello Steelmagnolia

Sorry for the nightmare you've been going through. You certainly don't need all that unnecessary incompetence to frustrate you and stress you out. You have enough to deal with.

Glad to learn that someone listened to you, and you have an appointment tomorrow at MUSC.

Best wishes to you - let us know what you find out

Take care,
KoKo

[steelmagnolia]

back from appt

Well guys.... I am back from my appointment. They went over the records that were sent to them and did a very thorough exam on me and talked. I did not see the head of the dept but an attending. They told me that my symptoms are NOT neurological. I have no idea how they can say that. I had a very long walk from the parking garage to the office in the heat. It felt like my legs were going to give out at any minute.

She thinks it is all fibroymalgia which I knew I had. However, she is going to do an MRI on my cervical spine and repeat EMG. She said they have better testing there for the EMG. She also took alot of blood....6 vials. They are testing my vitamin D, Vitamin B12 and folate (which always has been normal but the D I am deficient in), thyroid, ANA, DNA?? etc. This is a very frustrating thing trying to get a diagnosis. I just can't understand how all this numbness and tingling and electric type zaps, etc is not neurological. The numbness and tingling used to be intermittent and only in my fingers but now its constant and in my hands and constantly in my feet and sometimes my lips and my back etc.

Will see what the other tests show. Have any of you ever run into any of this situation? There are so many more symptoms like intermittent ptosis, etc and I just find it hard to believe that this is not neurological.

[jazzgirl]

No, I never had a doctor tell me that my symptoms were not neurological once I actually saw a doctor about my problems. By then, I was in a full flare-up of the disease. My first symptom was optic neuritis (obviously neurological).

I'm glad the doctor took time with you and ordered some appropriate testing. Keep pushing for answers!

[steelmagnolia]

unbelievable

Thank you for your reply jazz. I don't know if you saw my original post where I listed all the symptoms I have been having. I do also have fibroymyalgia. I know these symptoms are neurological...I mean, they are! sighhh
I never had optic neuritis. No lesions have shown up on brain MRI, and they will do MRI on cervical spine. I am wondering about evoked potentials.....she didn't mention that, but said repeat EMG.

They did get a copy of my records. I was seeing a rheumatologist for the fibromyalgia and he also treated tendinitis in both elbows and trochanteric bursitis in my right hip, which those he injected when needed. I kept telling this doc that I was having awful pains in my feet and when I would get up in the mornings I could not flex my feet, but rather shuffled to bathroom like an old woman. He never looked into it and it got worse and very painful. Another doc of mine told me about this podiatrist that she herself had seen and gave me name and recommend I go to him. I saw him and he diagnosed bilateral "severe" plantar fasciitis and also bilateral Morton's neuroma. The neuromas he has been treating with injections and they really helped me and even helped with the pains going up my legs and into my hips.

The rheumy guy had said that all that pain was fibromyalgia. Well, it wasn't. The fasciitis and neuromas were documented on ultrasound. I have copies of the ultrasound pictures. There is no test to diagnose fibromyalgia. When I told the rheumy that I had seen the podiatrist and got relief from the injections he made a remark about this doc "thinks he can cure fibromyalgia with injections!" He resented that I went to him. Resented another diagnosis, even if it was accurate. Resented that I got relief from someone else. He says that every complaint that I have is fibromyalgia and it simply is not. I will not see this rheumy again as I feel that he did not do everything he could to help me and there is no room for professional battles of the ego over something like this.

I think this new doc today read those records and is just "parroting' what he said. Does anyone else here have fibromyalgia? I also have these skin lesions that 4 dermatologists and an allergist were not able to determine where they came from and have had issues with them for 3 yrs. and broke out now. I showed her today. She said its fibromyalgia!!

I am upset. I feel like I went from frying pan into the fire here.

[onlyairfare]

From all those tests ordered, it looks like you doctor is looking at all possibilities that might cause your symptoms. When you have been sick for years, and have had multiple problems and diagnoses, it is not going to be easy to make a new diagnosis with one visit. And if a C-spine MRI is ordered, that is usually in search of a neurological problem.

I'm sure it is frustrating, but I hope you can hang in there. It looks like your new neuro is looking at all possibilities including a variety of auto-immune diseases (one of which can be MS) and hoping to find something that can be treated successfully to relieve your symptoms.

You'll be in my thoughts and prayers that effective solutions can be found for you.

[steelmagnolia]

thank you....

Hi Onlyairfare!! Thank you for your reply and for your thoughts and prayers, especially!! Yes, they are conducting some tests that may tell us something....or rule out something else. I was just reading up on the side effects of a drug I am taking....Spironolactone 100 mg 2x day. Its a hormone....they use it as a diurectic and also works for hormonal cystic acne and excessive hair growth. This drug can have some side effects like tingling and weakness in the legs, fatigue, skin eruptions, gastric and GI issues (which I am beginning to have a problem with), lethargy and drowsiness (have issues with this as well as sleeplessness at times) ...I was awake until 5am today and then slept till 9am and finally just got up. So, there are many avenues to explore.

I am also now having problems with blurry vision as well. It is really giving me a problem as I type and try to complete words and they often get turned around and misspelled, as I don't often see the tale-end of words I am typing....which is weird.

I am also looking at dietary issues as well....I was using Splenda as a sweetner, and surprisingly it is advertised on dLife, a website dedicated to diabetes, but, as I read, this product can also give serious side effects. So, this morning my Splenda went into the trash. I guess its better to use regular sugar than unnatural chemicals which are more harmful.

I am going to talk to my doctor about weeing off of the Spironolactone. I did the same thing with Crestor, a statin drug for high cholesterol and now I am using the omega's 3-6-9 and Evening Primrose Oil in doses that should be helpful with that issue. I will have my cholesterol rechecked soon. We have to take an active role in trying to determine where the symptoms are coming from and just try to do our part in figuring out the causes. I am trying to supplements and natural substances as much as I can as I learn about them, to get away from all the synthetic chemicals. I do have fibromyalgia as well, and one of its symptoms is hyper-sensitivity to chemicals and medications. It can be very frustrating at times, as I know you all know!!

Again, thank you and I will keep you guys posted as to the results of these tests as they come in. Blessings to all of you and thank you for your prayers. Lyn in SC

[KoKo]

Hello Steelmagnolia

Thanks for the update, even though it is still a frustrating situation for you.

Looks as if the testing isn't finished - which means more waiting for you. Let's hope they get to the bottom of this soon.

I don't understand how some of your symptoms wouldn't be considered neurological either.....

We're pulling for you that you have some peace through all of this Let us know what you find out from your new tests.

Take care,
KoKo

[Jelmo99]

Hi Steel
I have dealt with symptoms for over 15 yrs, went through the gambit of drs telling me its all in my head, your a hysterical female, even went as far as having a dr tell me "you must like feeling like this because your not doing a ... thing to stop it". (no longer see him).

dont let the drs comments get to you. They are human, and they make mistakes. I have to hold my tongue wanting to go back and tell them ALL see "I told you so" but I wont.

I also have fibro...we I thought I did, when I went to my rheumy he said I had all the triggers and labeled it "fibro" because it wasnt an "inflammatory process". His words not mine. anyway, over the years I went on a 5 yr dr strike and didnt see any. I went about my life and suffered through all my symptoms and dealt with each the best I could. Not good enough.

When I went to a neuro appt with my mother for her Alzheimers, I out of the blue asked the neuro "what can you offer a MS pt, to help them get dx'd"? when he listed off things he could do there at the office, plus things outside his office I was impressed. I was dx with a myopathy (muscle disease) back in 1995 which they labeled as a form of muscular dystrophy without an exact name type. Since then I believed it was MS, but my body wasnt cooperating and showing what the drs needed to see at the time. So everything was pushed off as "its the myopathy or the fibro".

I made an appt with my moms neuro, he got me in quickly. Within seeing him for evoked potentials, massive blood work, MRIs, EMGs, etc etc... after less than 6 weeks, I was dx with MS. my body cooperated this time. He in the process took away my fibro dx... after squeezing all extremities and asking does that hurt... and it didnt, he said he didnt believe it was fibro. DUHHHHH it seems to be a "catch all" dx anyway for most drs.

My point is... Dont give up... find that dr that you trust will do the tests, and give you the feedback on his thought process. Let them use you as a "guinea pig" and do what they can, I know I recented that for a long time, but ultimately let him/her do what they have to. Start from the beginning...I gave reports of past results only when asked. I was more concerned that he would find his "own" conclusion without referring from past experiences. Luckily it worked.
Good luck, and email me anytime if you want to chat more. I hope you get answers, but wanted you to know...."your not crazy" even when they make us feel that way.

[0485c10]

Thank you all for your help. The other doc I saw was not interested in looking at spine MRI on me. I don't know why, especially since I have had 3 operations on my neck and have a metal plate in it. !

First congratulations on getting into a better place than were you were. It always nicer when the future is looking up.

And just my curiosity, I did not think anything with metal can go into an MRI. I know I forgot my keys in my pocket once and the MRI knew it pretty quick and they stopped the MRI scan until my keys wher outside of the MRI, the continued. How did you get an MRI of your spine with a metal plate in your neck? Just a brain & thoracic spine MRI and you were able to go in the MRI tube with that metal plate in your neck? I have read post of people with rods in their spine and they can't get spine MRI. But to get any spine MRI your head & neck has to go in the tube. To get to the thoracic part of the spine. Can that be done? Have you seen the MRI's of your spine, maybe they weren't clear because of the metal plate in your neck?

[steelmagnolia]

tests are complete and now waiting.....

Hi Folks......thank you for your responses and Janel thank you for sharing with me how you approached this. I wish I had not had some of these records sent to the docs I am currently seeing as it is very obvious to me that they have "parroted" what this one rheumy was saying....and he was wrong on several things.

Yesterday I had an EMG done....at the beginning of that test there were a couple nice lady techs who did the initial part of the test. They asked me about my symptoms and when I told them, one spoke up and said "that sounds like MS"......which I know it does. Then the doc came in and did the remained of the test and told me that I tested ok....I am not sure what role an EMG would play in diagnosing MS, maybe to rule out other things??

To answer your question about the plate in my neck.....its made of titanium steel......I don't know if that plays a part in the ability to do the test vs the type of metal used to make your keys or not. I have had several MRI's over the years with this plate and some way it works.....how? I don't know....maybe someone else could answer for you. This was MRI of cervical spine with and without contrast. So, now hopefully I will get the results and see what they show.

You know I really have such a hard time with doctors being that way... and then I find that I in turn develop an attitude towards them.....which is not good. Two wrongs don't make a right!

Also, I don't really know what good it will do even having the diagnosis. I will be 56 yrs old in a few wks. At this age would I know be considered primary progressive? Haven't I read that there is no treatment for someone with that type of MS? I don't know.

Oh and on the lighter side.....you guys may find this to be "cute".......the neurologist that did my EMG yesterday.....sticking me with those little electrode needles all over the place.......his name is "Dr. Stickler"!!

Thank you all for being there and listening and sharing with me. Blessings, Lyn

[onlyairfare]

Thanks for the update, steelmagnolia. I'm thinking of the Tom Petty song "The Waiting Is The Hardest Part." Ain't that the truth!

As far as the MRI and metal, I think that the main concern is metals that contain iron. "Non-ferrous metals" - those that do not contain iron - won't be attracted to the giant magnet that is the MRI machine.

Most of the time, I think how old you are does not influence the diagnosis of the type of MS, or whether you get DMD treatment. There was a thread on age and treatment a while ago, and I think even MSers in their 60's when dx were started on DMDs.

Still keeping you in my prayers while you negotiate the medical maze.

[steelmagnolia]

thank you, only

thank you so much for your continued prayers, only. I am still waiting to hear something on this round of tests.....hopefully it won't be much longer. In the meantime, I just try to keep myself busy and focused on the Lord and try not to think about it.

Blessings!