introducing myself

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Mamaw
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted Yesterday 10:55 AM (GMT -7)   
Hi everyone.
I have been lurking for a few weeks and finally decided to join. I am a bit on the shy side and bruise easily so it took me awhile to decide.

I have a few medical problems and am in limbo land on the MS diagnosis, but it does look like it. I think if the Doc's would actually read the reports for the tests they have me take and actually listen to what I have to say the firm diagnosis would go faster. To be honest though, with multiple things going on it does make things a bit more confusing.

I have Addisons Disease (primary adrenal insufficiency) which took years to diagnose. Deteriorating joint disease (cervical discectomy & fusion), maybe Sogrens (Dry eyes, stones in salivary glands, parotid salivary gland removed). Familial Tremor which at times changes to an inner body tremor. Gal bladder removed, it was inflamed and non functioning for years before a huge stone was found & I said ok take it out. Slow gastric emptying and low motility in small intestines to point of blockages at time but all other times chronic diarrhea due to Addisons. I get muscle spasms and spasticity (could be attributed to chronic dehydration from Addisons). Not always aware of were my hands & feet are. Drop things and stumble a lot. Double vision. Heat intolerance, Keep thermostat at 60 degrees even though on CAP program for gas (pay $25/month regardless of usage). Eyes are severely light sensitive. If I get out of bed to do anything but get on PC I must recuperate for days. Sciatica. Numb hurting burning hand & feet. Raynuards.(sp?) Tumors on both addrenal glands, had the left one removed. Trace of blood in urine 3 years. Balance problems, lean against walls to walk. Choke on saliva, liquids, & sinus drainage, but only occasionally. Charley horses in tongue are horrible. Excessive sweating with exertion, yardwork is very limited.
I need to have both knees replaced & in the future hip. Cognitive issues are limiting me. I used to build PC's, now I can't remember how to format a hard drive & reinstall windows. Have an associates degree in electronics, can't remember any of it. My mind stumbles over words when talking, nouns have turned to descriptions. Go downstairs to get something and come back to my room with everything but what I went after. Forget medications or when was the last time I took what, have to write down times of everything I take. Make lists for everything, daily routine and shopping. Drove for a living for 20 years, knew every road in 50 mile radius, now forget how to get across town on bad days. Burning muscles on exertion, need to stay in bed for days.

PCP sent me to a neurology clinic last summer. They acted like they were doing me a favor by letting me see an intern after waiting 3 months. I had to insist on an MRI. I have learned to have all test sent to me. Got the cd in 3 days. Report says lesions in periventricle white matter, brain stem, pons. Intern calls me 3 weeks latter & says everything looks fine. I informed him that I have a copy of the MRI & report, what about the lesions. He said they are not important, just cause I smoke cigarettes. Well what about the symptoms? Now I am waiting to see an MS specialist, but losing faith in the medical profession quickly.

Guess this is quite long, sorry, but things are complicated.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted Yesterday 4:24 PM (GMT -7)   
Hey Mamaw

Welcome to the board! I"m so glad u decided to join and post! We're glad u'r here and hope u find the answers and support u may be looking for. U do have a lot going on. I'm so sorry that more may be being added to that. Are u seeing a neurologist? What tests have u had done? Hang in there friend. We'll be here with u and try to help u get thru this.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted Yesterday 5:01 PM (GMT -7)   

Hi Mamaw,

I am glad you posted. Welcome to healingwell.  You definitely need an explaination to those lesions besides smoking.  I have never heard of smoking causing brain lesions!!!  I would definitely go see that MS specialist.  Good luck and let us know how you are doing.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted Yesterday 6:39 PM (GMT -7)   
Hi there Mamaw,

I have to say the doctor who said the lesions on your brain are nothing is a complete Jacka@#. Oh my stars, is he crazy. I think you deffinately need a second opinion here Mamaw. Hang in there and i am sure you will feel better after seeing the MS specialist. Hopefully he will have some answers for you. It is very frustrating. You have to be your own advocate, so don't stop till you get some answers. Most of us here have been down the same road and completely get where your coming from. Glad you decided to join, Welcome!!!

Lynn
Dx MS December, 2006
Started Tysabri March, 2008
Zanaflex as needed
Cymbalta


Mamaw
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted Today 7:30 AM (GMT -7)   
I want to thank you for welcoming me and confirming what I thought about the telephone call from the internist. Lynn, that is exactly what I asked him, "are you crazy? That is the most rediculous thing I have heard yet about smoking" My hospital aquired MRSA with the adrenalectomy was blamed on smoking. I later found out insurance companies will no longer pay for the treatment of it, the hospital caused it so must foot the bill. They actually booted me out with the surgical site oosing puss then readmitted me 2 days later for iv antibiotics. It took 2 days because no one would return my calls, so I called the hospitals main complaint phone number.

Anyway, I told him I had no interest in helping him further his education and hung up on him. My ENT surgeon suggested an MS specialist at UPMC, I called but could not see him for 6 months, so I settled for another internist who saw me twice and left for greener pastures, but I will see the specialist in 2 weeks. The internist said she did not think the lesion look typical for MS and wanted to rule out many other things first. She had me see a motion disorder neurologist for the tremor (klonopin) and an opthoneurologist for the double vision (?th nerve paulsy, suggest I were contacts at the same time as glasses-no thanks), and a neurosurgeon. Finally an MRI of cervical spine. He said I have 3 deteriorated discs causing some of my symptoms, need to take out 3 & fuse 4, spinal stenosis. OK. After surgery I find he took out one & fused 2 with a plate that messes with future MRI's. Physicians Assistant said my bone quality was so bad it would not hold more hardware. Surgeon denied this. One more MRI & xray confirmed crooked plate and something "consistent with muscle spasms" and he said I no longer need to see him. What?

I also had a nerve conduction test on one arm & one leg. Liked to kill me the spasms hurt so bad. Everything normal. Had blood tests for MG, all except the newer musk test. Normal. Also had all the other rule out blood tests, B12, Lupus, iron, copper, Lyme, ANA, titre, TSH, T3, T4, etc. All normal. On my second appointment with the internist at UPMC MS clinic she asked me if I had the results of these test (duh) as their staff takes months to forward incoming test, they are sitting in a pile on someones desk. She then informed me she is leaving the practice & next I will see Dr. Mitchell, who I was referred to anyway. All of this has taken about 6 or 8 months, can't remember, but I am sick of all of them.

The only change in my condition in the past year was when I started on the Hydrocortisone for AI, head slowly stopped spinning as it accumulated in system. Dosage got adjusted upwards a few times. Then I learned from an addisons group that some folks need to take 2/3 of their dossage in the am. I tried it and after a few weeks I can finally spend a few hours a day out of bed and am starting to get some motivation back, just enough to think about what I want to do. If I go out of the house I am back in bed all day for days, lethargy.

Oh, I forgot, after being so frustrated with the docs before the Hydrocortisone & Brain MRI, I used to get so angry with them that I would cry in their offices. They would say I need antidepressants and have fibromyalgia (no trigger point reactions at all) and some non specific autoimmune situation (what?). I figured I would humor them with the antidepressants just to get further in diagnosis, no difference. But the Hydro gradually helped with the anger and constant crying, now I only cry when I do to much & Hydro is too low & dehydrated.

I am looking forward to being a part of a community where I am understood and not judged for my limitations. From what I can tell from other posts I know I can learn a lot here and finally be able to sort through my symptoms, figure what is the Adrenal Insufficiency & what is possibly MS related. Thank you again for welcoming me.

Lynn-Mamaw
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