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Old 08-23-2020, 12:43 AM #1
Cindyjo Cindyjo is offline
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Unhappy Mimics MS

Been struggling since 2005 with bizarre neurological symptoms. Every time I see a neurologist it's always the same "It sounds like MS. You have many symptoms that mimic MS but no lesions on your MRI." So, the diagnosis is always the same. Polyneuropathy and fibromyalgia. And I've heard a gazillion times "have you been under a lot of stress lately, it could be psychogenic?" Oh my goodness gracious, I want to pull out my hair. If I just had a more definitive diagnosis to help explain what is happening to me maybe I could cope a bit better.

I've been in a bad flare up for a few months and it's getting harder, not easier, to cope. I'm starting to get depressed because I can hardly work and when I do work my concentration is horrible. The fatigue is disabling. I have neuropathic pain all over my body (I'm diabetic but it's not just hands and feet, it's widespread). This flare has brought on some new symptoms. Surging waves that come over me. The waves feel neurological and my skin and inside of my mouth burn like I have a sunburn or scalded my tongue. Sometimes I get really cold. I buzz and tingle and sting and twitch. I tell my husband that in the mornings I feel like a piece of fabric that is unraveling around the edges.
At night I tell him I feel like wiggly burning rubber. Deep muscle aches have been present all these years but SUPER stiff joints and cramping muscles are new with this flare.. No optic neuritis or bladder problems.

I'm a mess. No wonder I feel like I'm unraveling. But, I truly do not think this sensation is anxiety. I believe it's the neuropathy. It goes all over me for a doctor to suggest it's psychogenic.

Feeling frustrated. Finding myself unable to work much. Sleeping too much. Miserable with the neuropathy and burning sensations. The surging waves of weird neuropathic pain is kind of scary.

Sound familiar to any of you?

Cindyjo
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Old 08-23-2020, 11:45 AM #2
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Hi Cindyjo,

I can't say what is causing your troublesome symptoms but putting up with them for the last 15 years must have been very discouraging and draining for you.

Sometimes MS lesions don't show up on an MRI but the symptoms you describe wouldn't fit the usual MS picture. Fatigue and tingling might point to MS but there would need to be other problems--vision, bladder, bowels, speech, etc. MRIs are the usual diagnostic tool but often a spinal tap is done as well.

You don't mention how many times you've consulted doctors but it sounds as if you've been to several neurologists. I wonder if the Type 2 diabetes is under good control? Your primary care doctor should be monitoring that with regular HbA1C testing and possibly other tests.

Your problems might be fixable by an adjustment in your diet, for instance. There might be a needed nutrient you're not getting--or are getting too much of.

I hope that you can find an answer soon!
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Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 08-23-2020, 01:34 PM #3
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My sister didn't get a clear MS dx early in her 20's and she went on to do her life, a lot of stress in her job and then what I believe was yrs of remission MS was full blown. She lost her battle at 68 and did all the pharma drugs they pushed down her body.

Nutrition was so overlooked in her life, she was a major sugar and carb aholic... these are no no's for anyone not just MS patients.

Tackle your issues one at a time, get that stress under management.

And get the diet cleaned up.

And there is so much info on the neuropathy issue here, and I've posted so much myself.

How is your Vit D? This is important.
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Old 08-24-2020, 11:43 AM #4
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Hi Cindyjo and welcome to NeuroTalk

I am sorry about the symptoms you are experiencing.

I went back and read your other Thread in the introduction section. Body wide symptoms such as you have explained isn't quite how this disease works. Many things can sound like MS but are not MS.

I see that you use Baclofen and Lyrica. A side effect of Baclofen is sleepiness and weakness, so if you have seen an increase of those symptoms since starting Baclofen it might be the cause. Lyrica can also cause drowsiness.

It's always a good idea to be aware of medication side effects as they can make it seem as if something is wrong or getting worse. Everyone reacts differently to medications.

Polyneuropathy and Fibromyalgia could certainly be causing your symptoms.

I wish you all the best and if you have any questions please ask
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Old 08-24-2020, 04:58 PM #5
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Hello Cindy,

maybe a spinal tap could help you, and also to discard not only MS, but much more diseases.

The only thing I can think of MS is that your lesions were so small that the MRI is not detecting them, or they appear/disappear so quickly.
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Old 08-25-2020, 03:12 AM #6
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Thank you all for your sincere reply’s. I was frustrated after my appointment w the neurologist and wanted feedback back directly from people who are living w MS. I just wish I had a more definitive diagnosis.

Stay safe out there!!
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Old 08-25-2020, 12:54 PM #7
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I'm sorry you are having such a rough time. It's so frustrating when we feel the doctors aren't listening and don't have that validation. I think we all have been there to varying degrees.

Have you discussed any of this with your primary care doctor? They may be able to help get the ball rolling quicker and in the right and/or different direction. Unfortunately, there are a number of diseases that mimic MS. Your PCP may be able to come at it from a different angle, maybe testing for other autoimmune diseases and even going to a rheumatologist.

It's really hard to be struggling and have no definite answers to anything. Hang in there and let us know how you are doing.
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